Honored Kid

Madison Demers

Madison Demers Kid Photo


Port St. Lucie, FL, US



Date of Diagnosis

May 2016


Passed away

Treated At

Nemours Children's Clinic - Orlando Cleveland Clinic Children's Hospital

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My Story

In late April, when nine-year-old Maddie complained her knee hurt, her father and I played it safe and took her to the doctor, but there was little concern it was serious. Maddie was, by every definition, a healthy and active child. When she wasn’t giving her all as the captain of her cheer squad, she was tearing up and down the street on her bike, dancing in the living room with her sister, playing tag with the neighbors, or splashing in the pool with her cousins. Maddie was the kind of kid who skipped instead of walking; who sang at the top of her lungs when her favorite song was on the radio; who giggled often; who enjoyed every ounce of life there was to enjoy. After an x-ray revealed suspicious shading on her leg and a referral to an orthopedic specialist, I found myself blazing up the highway to Orlando, having been given an emergency referral to a Children’s Hospital and explicit instructions to get Maddie there as fast as possible. Her bone scan came back with alarming results- cancer had aggressively attacked most of her bones and she needed a team of specialists to determine the extent of the disease and the treatment plan. There was no time to process this information; no time for questions; no time for answers; no time to pack; no time to plan. No warning whatsoever. After a painful bone biopsy and extensive testing, we had a name for Maddie’s disease: Multi Centric Osteogenic Sarcoma, one of the rarest, most invasive, fast spreading forms of bone cancer and the prognosis was poor. It was already advanced in stage and there were small lesions in her lungs and soft tissue. We were told to prepare for a long fight and were warned that even with incredibly aggressive treatment, Maddie’s recovery could not be guaranteed. In an instant, everything we knew as normal came crashing to a sudden halt. Maddie’s chemo therapy began in early May, and our family held down the fort back home and cared for Mackenzie (Maddie’s 11-year-old sister). High doses of strong chemo quickly took a toll on Maddie. Her bones became weak and walking became painful. The chemicals being pushed through her little body compromised her immune system. She lost her hair and became unable to tolerate food. A dangerously low platelet count required blood transfusions and she needed around-the-clock pain management. As excruciating as it was to see her deteriorate, we clung to the hope that it was not in vain. We prayed the disease would retreat. After a month of rigorous treatment, we were called in to review Maddie’s progress and handed the devastating news that the cancer was more virulent than ever. With heavy hearts, we sat through hospice counselling and were advised to focus on helping Maddie be as comfortable as possible the remainder of her days, which were numbered. Unable to accept the finality of that prognosis, we began scouring the world over for second opinions and alternate treatments. After a very expensive med-flight that was not covered by insurance, we landed in Cleveland, under the care of Dr. Anderson- a renowned bone cancer expert and a tenacious optimist who encouraged Maddie to dream of her future. As much as he promised in the way of hope, he also provided in the way of insight and experience. He frankly prepared us for the fact that while Maddie would engage in a fight for her life; we would wage war against our insurance company for every bit of treatment he was proposing. Bureaucracy would try to stand in the way of Maddie’s recovery, but Dr. Anderson believed could save her life, so he pressed us to be fierce and resilient. His approach consisted of three stages- none of them conventional. Step one was to stop the growth of the cancer with a dose of chemo that had never been given before. While Maddie powered through the chemo, the sickness and weakness that came with it brought her to a very dark state. Some say chemo is worse than the disease it cures, but few come as close to peril as Maddie did. There were moments when nobody knew whether she’d pull through. Before stage two of her recovery plan could take place, Maddie had to demonstrate a favorable response to phase one. We rejoiced the day her bone scan came back indicating no progression of her cancer and a reduction in the tumors in her lungs! This child, who conventional medicine abandoned, was rallying hard and showing the world she was a survivor. Maddie began the next phase of her treatment plan- Radium 223. This injected radiation treatment was typically prescribed to prostate patients but Dr. Anderson believed it would be successful in arresting Maddie’s cancer. The insurance company rejected the drug on the premise that it had never been used to treat bone cancer before. After a very persuasive argument from Dr. Anderson and the Cleveland Clinic, they reluctantly agreed to cover a portion of it, on a trial basis. The Radium proved to be a game changer. With very little in the way of side effects, it is fighting the cancer while giving Maddie’s frail body the chance to regain some strength. Maddie can eat again, and her color has returned. Her smile once again lights up the room and she is working hard to walk again. We spend most of our time between treatments staying in a graciously donated home in Cleveland, where she is catching up on school work and dreaming of her return to our home in Florida. This brings us to Maddie’s current state, and the rest of the fight she has ahead of her. She is on her last Radium treatment and though she has had several setbacks, including some new tumors in her soft tissue and on her spine, which required the reintroduction of mild chemo, and radiation treatment, she is making progress and we remain hopeful. Her progress has been nothing short of inspiring, and her ability to draw strangers and friends alike into her journey has given everyone hope there is a greater calling for all she has endured. We can’t wait to return to normal life. While I am in Cleveland with Maddie, her daddy Mike and sister Mackenzie are in Florida keeping up with work and school. Heartsick about being separated for the moment, we have faith we will be reunited once Maddie is recovered and able to come home. To learn more about Maddie’s Fight, visit www.maddiesfight.com. To share a message of hope with Maddie or to see the rest of the amazing team supporting her, visit her Facebook page https://www.facebook.com/MaddiesFight06/?ref=bookmarks. Thank you for supporting me and the more than 300,000 kids worldwide who will be diagnosed with cancer this year. 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