Condition: JPA Brain Tumor
City, State: Roseburg, OR
Club: Douglas High School Sparrow Club Service Hours:
Date Adopted: 1/28/2015
Sweet-natured Macie was born on September 17th, 2010. Over the next several months, Macie’s parents noticed that she wasn’t quite meeting developmental goals for babies her age. They also noticed that Macie would make frequent strange movements with her eyes. Tests were done, along with a scan on Macie’s head. The scan revealed that Macie had a walnut-sized tumor in the center of her brain, sitting on her pituitary gland, hypothalamus, and optic nerve. Because of its location, doctors say the tumor is inoperable. The scan also showed that Macie had hydrocephalus (excessive fluid build up inside the skull), which puts pressure on the brain.
Macie was officially diagnosed with a JPA brain tumor in April of 2011. Doctors installed a shunt to drain fluid, in addition to taking a biopsy of the tumor.
Fortunately, the results of the biopsy showed the tumor to be benign. However, although the tumor is not cancerous, it has to be treated like it is cancer in order to keep in from growing. Little Macie has lost vision in one eye due to the pressure being caused by the tumor on her optic nerve. Macie has been on and off extensive chemotherapy treatment since she was seven-months-old, and her parents received more hard news in late 2014. Although doctors say the tumor in Macie’s brain is still benign, scans reveal that it is growing.
Macie underwent a biopsy in September 2014 to qualify for a new clinical trial. She is the youngest person involved in this trial, which involves taking a new medication (form of chemo) once a day for a period of two years. Hopefully, this trial will prove successful and Macie’s tumor will shrink dramatically.
In spite of all of this, Macie is usually a happy and affectionate child who seems to always be laughing and who loves playing with her big brother Logan.
Students at Douglas High School will make Macie the focus of their lives as they work hard to raise money for her through community service and fundraising projects, sponsored by Southern Oregon Elmer’s and InfoStructure.