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Golden Ribbon Hero Kale’s Story

Kale’s Story: Astrocytoma Brain Tumor

acco_chicago061516-3566“Everything you think you know about cancer, until you’re living it, you don’t know anything.”

Barely two years old, Kale has been fighting childhood cancer for most of his short life. At his routine four-month check-up, his mother asked the pediatrician about some strange symptoms she had noticed: his head seemed slightly larger than normal and his eyes fluttered back and forth in an unusual way. Although the pediatrician did not have any immediate concerns, he recommended a follow-up visit with an ophthalmologist just to be sure. The ophthalmologist, however, was immediately concerned. His exam quickly revealed unusual swelling in the optic nerve (the nerve responsible for communication between the eyes and the brain). He recommended that Kale’s parents take him to a hospital right away for additional testing.

The results were devastating: Kale had hydrocephalus, or a build-up of fluid around the brain, caused by astrocytoma, a type of brain tumor. Astrocytoma forms from the “glue-like” tissue that supports the brain. In Kale’s case, the tumor had grown in place of the tubes that allow the brain to naturally release fluid to be reabsorbed by the body. Moreover, although Kale’s tumor was diagnosed as Grade 2, it had already metastasized to his spinal column and would needed to be treated as if it were Grade 3. Kale’s parents were told that the odds of Kale’s survival were low.

acco_chicago061516-3587“We never knew what to expect from one day to the next.”

The emotional rollercoaster described by Kale’s mom began that very day. The first challenge was releasing the fluid pressing on Kale’s brain. Doctors first tried an AP (arterioportal) shunt that would allow excess fluid from the brain to drain into the stomach where, in theory, Kale’s body would naturally reabsorb it. Unfortunately, Kale’s stomach quickly became overwhelmed with fluid, which in turn led to breathing problems. After manually draining the fluid from his belly six times, doctors turned to a VP (ventriculoperitoneal) shunt, which drained the fluid into his heart, where it could be pumped around the body and reabsorbed through the blood stream.

Having coped with the hydrocephalus, Kale’s oncology team turned to fighting the tumor. The diffuse nature of the tumor made surgical removal impossible. While brain tumors in older children and adults are usually treated with radiation therapy, radiation is not recommended for children under the age of 3 due to the high risk of long-term damage to the delicate tissues of the brain. Kale began his first round of chemotherapy just two weeks after his initial visit to the ophthalmologist. Now into his third round of chemotherapy, Kale’s tumor is not shrinking but it is also no longer growing. While his parents hope that the treatment will eventually begin to shrink the tumor, they also realize that the tumor could also begin growing again at any point. “We are living in fear of the future,” states Kale’s mom, “it’s like there’s an angry beast attacking our child, and there’s nothing, as a parent, I can do about it.”

acco_chicago061516-3529“We are not alone.”

Kale’s mother clearly articulates the emotional challenges many childhood cancer families face when they first hear those words: your child has cancer. “It’s a whole new world,” says Kale’s mom. She describes how they learned to navigate the medical terminology needed to understand the treatment protocols, how they learned how to operate the medical machinery needed to monitor Kale during chemotherapy. Yet despite never knowing what was going to come next, they continue to fight, every day, for Kale’s life.

Even in the darkest moments, they have found some comfort in discovering that they are not alone, that there are others who feel the same way, that there are others fighting the same battles. Kale’s name is on this year’s Childhood Cancer Awareness Shirt, one of more than 5,700 children featured on the shirts. Kale’s mother notes that seeing so many names brings a mix of emotions: sadness that so many children have had their lives turn upside down by childhood cancer, but also comfort knowing that there are other families who understand what Kale is going through. “Seeing the names helps us feel that we are not alone.”

About the American Childhood Cancer Organization

The American Childhood Cancer Organization (ACCO) is a non-profit charity dedicated to helping kids with cancer and their families navigate the difficult journey from cancer diagnosis through survivorship. Internationally, the ACCO is the sole US member of Childhood Cancer International (CCI), the largest patient-support organization for childhood cancer in the world. Here in the United States, the ACCO promotes the critical importance of ensuring continued funding into new and better treatment protocols for childhood cancer.  And most importantly, the ACCO is focused on the children: developing and providing educational tools for children fighting cancer and their families, empowering them in their understanding of childhood cancer and the medical decisions they must make during this difficult journey. All of ACCO’s resources are available free of charge for families coping with childhood cancer.

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