Meet Riley, she is 2-years-old and currently in remission from stage 4 brain cancer.
My name is Kelly! I have been a Registered Nurse for 8 years. My time spent working in critical care settings has fostered my passion for patient advocacy and helping families achieve the best possible care. Last year my family’s lives changed forever when my 10-month-old daughter, Riley, was diagnosed with cancer. Riley was experiencing intermittent vomiting, which was originally misdiagnosed as a stomach virus.
Less than a week later, Riley became very lethargic and began to lose consciousness. After I called an ambulance, we were rushed to the nearest emergency room and a CT scan revealed a large mass in her brain, which was causing a brain bleed. It was determined that she needed emergency brain surgery immediately. We were transported to another facility and for the next several hours my daughter endured a lifesaving brain surgery. A couple days later we heard those dreaded words “Your child has cancer”. The mass in her brain was a Glioblastoma, Stage 4 brain cancer. Within days, Riley had to endure a 2nd surgery to remove the remaining portion of the tumor. Though our wonderful neurosurgeon was able to remove the entire tumor, we were given a very poor prognosis. We were told that Riley would not survive longer than a year or two because of the aggressive nature of this cancer.
As a mom, and a nurse, I began doing research. I learned that Glioblastoma’s are often misunderstood in infants. I gathered 2nd and 3rd opinions from lead Neuro-oncologists around the country. Ultimately, my family ended up temporarily relocating halfway across the country to seek out Riley’s best treatment option. My daughter underwent a total of three brain surgeries and a very intensive chemotherapy regimen. I am happy to say my little warrior currently shows “No Evidence of Disease”. She is happy, thriving and hitting all her milestones. In fact, we recently celebrated her 2nd birthday. My family could not be more grateful to have her here with us today.
While my daughter was in treatment, I made friends with several fellow cancer families near and far; some of which had similar stories to ours. I learned several families are often so overwhelmed with the amount of information thrown at them and no one to help them navigate it. I am fortunate that I have a medical background to fall back on, however, many families do not. I found myself answering basic medical questions and translating some of the medical terminology for other parents. I helped families formulate what questions they should be asking their care team and helped them research available resources. I determined that I wanted to help these families on a larger scale.
In working with the National Pediatric Cancer Foundation, I now have the opportunity to help several childhood cancer families on a daily basis. This week, I helped a family understand their child’s diagnosis. I helped connect a family with a very rare brain tumor to a survivor who had the same rare tumor. I helped a mom find a therapist who was willing to talk via zoom, because her child is currently in isolation. I helped a family navigate a problem with their care by encouraging them to advocate/speak up, while guiding them with what questions they should be asking. I am not here to give medical advice, but rather consult fellow cancer families & guide them with this daunting journey.
In addition to consulting pediatric cancer families, I will be updating the NPCF toolkit. The toolkit is a notebook that contains a plethora of information, regarding all things related to pediatric cancer. A team of volunteers and I will be editing the toolkit yearly (since medical information is always evolving). I will also be developing a national mentorship program to help cancer families connect with other families who have been given the same or similar diagnosis. From my experience, I found the connection between cancer families to be very special. These connections can provide hope, as well as emotional support for families, because a pediatric cancer diagnosis affects the entire family.
I am very excited about my new role as Health Navigator with the National Pediatric Cancer Foundation. I am grateful for the opportunity to help fellow cancer families navigate this unexpected chapter of their life.
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