Amy's Story

Amy was first diagnosed with Germinoma or in simple terms, a brain tumor, in July of 1991, when she was 11 years old. She underwent brain surgery and radiation at the University of Washington in Seattle. After a year of hospital visits and aggressive treatments, she went into remission for 17 years. The peculiar part about her illness is, in her small town, Onalaska, Washington, two other girls about her age were also diagnosed with brain tumors within one year. Doctors, scientists, and researchers all came to the town to try to find out what caused this cluster of brain tumors, but left unsuccessful in their efforts. Amy and the other girls even went on a local talk show to tell their stories and perhaps rally more support, but even till this day, no one has been able to find an answer.

Now, 17 years later, this July, Amy was diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG), a brain stem tumor. Doctors explained that the tumor was inoperable and that her condition was fatal. Amy's decision was to decline treatment and to live life to its fullest, spend as much time with family as possible, and make the best memories she could during the time God gave her. She tackled each day without complaint and with all the bravery in the world. Although we expected to have 3 to 6 months with Amy, she passed in her sleep early this morning, August 21st, just two days after her trip to California. We did not expect her to leave us so soon, but she stayed long enough to say her goodbyes to the people that loved her, and for that, we are all eternally grateful.

Entertaining Amy

While Amy was in California, the whole family gathered together to spend time with her and to make it the most memorable experience possible. Whether it was going to Disneyland, Market Night, Sea World, Knott's Berry farm, church or making her a big BBQ and a Taco Tuesday night, everyone was willing to pitch in. It was a time to be surrounded by family to share many laughs and good food together. Although Amy's health deteriorated quickly while she was here, not once did she complain. Instead, she watched, listened and took in all the love that surrounded her. We were all amazed at her bravery and her unfaltering faith she had in God. In fact, her faith was so strong, that she promised her Aunt Ruth that she would meet her in heaven someday. It didn't surprise us that as Amy hugged her Aunt goodbye at the airport on Tuesday, she grinned, quietly whispered, "Love you" and pointed to the sky.

It's true we will miss Amy terribly, but there's a lot we can learn from our time with her. Family is important, reach out to those who are hurting, leave selfishness at the door, cherish the laughter God gives you, but most of all, have a relationship with God and live with brave determination; after all, even as she looks at us from heaven, we will always and forever be entertaining Amy.

Amy's Disease Information

Diffuse Intrinsic Pontine Glioma (DIPG)

A Diffuse Intrinsic Pontine Glioma (DIPG) is a tumor located in the pons (middle) of the brain stem. The brain stem is the bottom most portion of the brain, connecting the cerebrum with the spinal cord. The majority of brain stem tumors occur in the pons (middle brain stem) and are diffusely infiltrating, (they grow amidst the nerves), and therefore are not able to be surgically removed. Glioma is a general name for any tumor that arises from the supportive tissue called glia, which help keep the neurons, ("thinking cells") in place and functioning well. The brain stem contains all of the "wires" converging from the brain to the spinal cord as well as important structures involved in eye movements, face and throat muscle control and sensation.

Source: The American Brain Tumor Association