On Wednesday, January 9th, 2019, Madelyn’s life changed dramatically. Like so many others, she had spent the weekend prior playing and being a kid. Maddie spent Saturday chasing her puppy and sister around the backyard, jumping on the trampoline, walking the aisle of target, and going to a movie. Sunday, was much the same, a day full of playing. And then things progressed. On Monday, Maddie noticeably lost strength in her left arm. Unable to push it up through her shirt sleeves. Tuesday much of the same, but her walk began to look more forced. On Wednesday, Maddie’s left arm looked limp, hanging off of her body, she dragged her foot when she walked, and she had slurred speech. She was taken to the ER, where a CT-Scan revealed what they thought was “blood on her brain stem”. She was immediately sent to Children’s Hospital in Washington, DC, where the Neurologist told Maddie’s family that there did appear to be some blood on the CT-Scan, but more worrisome, an “aggressive mass on her brain stem”. A rushed MRI revealed that mass to in fact be a tumor growing in the Pons. Tuesday, January 15th, Madelyn had a biopsy performed, and January 18th, the Neuro-Oncology team at Children’s confirmed this mass to be DIPG.
Madelyn was released from Children’s to the care of her family on January 21st, after 12 days of around the clock neurology checks, steroids, nausea, and being cramped in a hospital room switching between the PICU and the Neurology Unit. Beginning January 24th, Maddie began her radiation treatment. She had a total of 13 radiation appointments, Monday-Friday, until February 11th, when she was the 112th child to graduate from the Sibley Memorial Hospital, Pediatric Radiation Oncology program. Maddie remained fearless, and determined during her hospital stay, and her radiation appointments. Unphased by having to be poked, being on a pureed diet, and having to lay still during the delivery of radiation.
Maddie is now looking at several clinical trials, in an attempt to find something to help at the very least slow the regrowth of the tumor. Madelyn has been the definition of a warrior princess. She hasn’t so much as complained or cried once during this ordeal, and is facing each new tasks with complete poise and confidence. She is truly an inspiration to everyone she meets. From the nurses at the hospital that fell in love with Madelyn because of her infection personality, to the girls at her dance studio who notice how silent the studio is without her there. All of the teachers, and kindergarten students at her elementary school who notice the lack of her smile, laugh, and overall kindness and caring personality. Madelyn is a lover, a social butterfly who has never met a stranger, and one of the few people in this world who see beauty in everything. Maddie use’s her “Maddie Magic” to give us the beautiful sunrises and sunsets, and to control the weather. And Maddie’s ultimate wish is the same as Michael’s…. “To have my head be okay, and to be myself again”.
You can follow Madelyn’s story through her Facebook group: Team Maddie