Meet Riley, she is 2-years-old and currently in remission from stage 4 brain cancer.
Riley is the daughter of the NPCF’s Health Navigator, Kelly!
“I have been a registered nurse for 8 years. I was working as a bedside RN until my daughter Riley was diagnosed with cancer last April. Riley was just under 10 months old at the time. She had a week of intermittent vomiting and was initially misdiagnosed as having a stomach virus. Then one evening she lost consciousness. She had emergency brain surgery that night and a few days later we heard those dreaded words “your child has cancer”. We found out Riley had a Glioblastoma (stage 4 brain cancer). We were originally told she would survive 1-2 years at best, even with chemotherapy, because of the aggressive nature of Glioblastoma.
I did a lot of research and learned that due to lack of government funding, many pediatric cancers are still misunderstood…including Riley’s. After calling some of the leading Neuro-Oncologist in the country, I found a doctor who has done some trials and research with Glioblastoma in infants… he gave us hope for a cure. We relocated our family from Fort Myers, FL to Memphis, TN and Riley was in active treatment for 8 months.
Through social media and families that we encountered, I met with several childhood cancer families around the country who were also given wavering statistics and prognoses. I found myself answering basic medical questions, explaining terminology, and helping families finding available resources. That’s when I knew I wanted to use my medical background and personal experience to help other families navigate this daunting journey on a larger scale.
Dave Frazer (NPCF’s CEO) and I became connected through a local news broadcasting that featured Riley and that is how the Health Navigator position was created.
You’ll notice Riley’s cute bald head is now filled with a head full of hair. She is doing wonderful! We just celebrated her 2nd birthday last week. She is reaching all her milestones and is happy, smart, sweet, and asserting her independence like a typical toddler. We continue to have her evaluated every 3 months, but I am grateful to report that she is currently classified as having No Evidence of Disease and she is thriving.”
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