July 16, 2014, three days after her first birthday, Caroline was diagnosed with a Grade 1 Juvenile Pilocytic Astrocytoma (JPA) attached to her optic nerve, which makes it inoperable.
On February 16, 2015, Caroline was taken into surgery to remove 50% of the tumor because it had grown to a size where it was beginning to block two ventricles which was causing hydrocephalus. Thankfully, we had an AWESOME surgeon at Children’s Healthcare of Atlanta, and she came out of the surgery safely with very little impact to her normal bodily functions. She recovered fairly quickly, but as a result of the surgery and tumor location now has Diabetes Insipidus which is defined by her lack of ability to regulate sodium. Thankfully this has remained controlled.
Shortly after surgery, we had, what I define as nightmare number #2. The 2% chance that this tumor metastasizes came true. Our family fell into the statistic, and we fell hard. Unfortunately, Caroline’s tumor has a special mutation which caused it to spread. She now has 6+ additional spots in her brain and several at the base of her spine. This, of course, has changed our course of treatment. She is currently on a Phase 1 trial medicine from Duke University, and we are hopeful that we will have positive results on this medicine.
