by Kimberly Kuck (Hicksville, NY)
On June 6, 2015 we were told our perfect, happy, beautiful 4‐year‐old daughter, Amanda “Mandy”, was living with a monster inside her brain: Diffuse Intrinsic Pontine Glioma (DIPG), a rare and inoperable tumor found in the pons part of the brainstem. That day our family was thrown into the devastating world of pediatric cancer; our lives forever changed.
We were told staggering statistics about median survival ranging from 9 to 12 months; children with DIPG have a less than 10% chance of surviving 2 years. We immediately began researching options and treatments. Mandy underwent two major surgeries within those first three days: one for a shunt to relieve the fluid build‐up and pressure in her brain and another for a mediport to easily access her for bloodwork, anesthesia and, potentially, chemotherapy. However, shortly after diagnosis on June 15th, Mandy took a turn for the worse. Her tumor grew and she lost all ability to walk, talk, eat, and communicate. We were admitted to the PICU at Memorial Sloan Kettering Cancer Center.
She began radiation therapy there on June 16th along with a clinical trial. Only half way through treatment, Mandy gained back all functions except walking. We got our little girl back and tried to enjoy every moment of the summer! Unfortunately, a mere 7 weeks later the symptoms started to reappear and on August 26, 20915, we were readmitted to Memorial Sloan Kettering Cancer Center. An MRI confirmed what we were dreading: tumor progression. Over the next four days, Mandy lost her ability to eat, talk and communicate again. On September 3, 2015, we were sent home with hospice care and were told to prepare our goodbyes. She’s still fighting. She’s our miracle, however finite her time might be.
Mandy is courageous, easy‐going, thoughtful, kind, helpful, confident and reliable. Although timid at first, once she lets you in she doesn’t let go. She idolizes her big brother, Ben, and loves babies, possessing an innate motherly instinct. She also loves anything ‘girly’: fancy dresses, sparkly shoes, make‐up, purses, and jewelry. Yet, she’s not afraid to get dirty and messy. Her favorite places: the beach or a hotel. Mandy taught us to be strong. To be brave. To fight for what we want. That it’s okay to be strong‐willed and stubborn. To not be afraid to be yourself. Mandy has more confidence at 4 than most people have at 35. She never cares what people think about her (in the best way possible). Her intentions are never to be mean or rude but she also isn’t going to do something just because someone else wants
her to do it.
We love you always, Mandy. We are so proud of you and the mark you’re leaving on all those you’ve touched. Our goal is to raise as much awareness about, and funding for, Childhood Cancer as possible.
