July 17, 2014, three days after her first birthday, Caroline was diagnosed with a Grade 1 Juvenile Pilocytic Astrocytoma (JPA). This is one of the more common types of pediatric central nervous system tumors, but unfortunately attached to her optic nerve which makes it inoperable. As part of the diagnosis, we were relieved to hear that this tumor is slow growing and only has a 2% chance of metastasizing; however the risk of going blind is extremely high. As the recipient of this information and the parents of this child, we can tell you that your perspective of life and what’s important drastically changes instantly!
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 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 and has created focus on her case from oncologists around the country.
SO – here we are today.
3 years and 6 months later, Caroline is a spunky, SUPER sweet 4-year old who has been through 4 variations of chemo treatment, brain surgery to remove half of the tumor, an immunotherapy trial and is now starting a new trial for a Mek Inhibitor. Although Caroline has gone through a lot in her short life, she still has the energy and fun nature you would expect in any happy 4 year old. Caroline has an identical twin sister, Carson, and 5-year old brother, Stafford, who keep her spirits up especially on days she doesn’t feel well.
Because Caroline’s tumor is very unique, we are still in the fight (and will remain in the fight) to understand what will make it stop growing. In the meantime, we keep our faith and hope that one day a cure will be found.
Every child who has been diagnosed with childhood cancer inspires us to Rally On to find better treatments with fewer long-term side effects and, ultimately, cures. Please join us in the fight against childhood cancer by making a donation or setting up your own Rally fundraiser today.
