In August 2013 at age 18 Madison was just about to begin college. The weekend before it started she went to an amusement park and her neck became extremely sore after a gentle flowing coaster ride. Suspecting only a severe sprain, she stubbornly went to school the next day anyway, first day of college! That afternoon, off to the doctors who took an x-ray. The next day she received a phone call suggesting an urgent MRI. We all saw the pics together. The ER physician asked how this happened, that this 'injury' is consistent with a fighter pilot being ejected through a canopy, being kicked by a horse, etc. Madison's neck had several fractures and had collapsed in to her spinal cord. After several consultations and verifying the surgeons reputation and surgical expertise, emergency surgery was performed to remove C3 and C4 vertebrae since both were badly damaged, then replaced with titanium hardware. The neurosurgeon reported that there was a 'very friendly looking mass' expressing very high levels of confidence it's a benign mass, but it will be sent to pathology to confirm as a formality. Three weeks later the pathologists concluded chordoma, an extremely rare and tenacious bone cancer that impacts one in one million people. To make matters more intense, the sub-type of Madison's chordoma being 'poorly differentiated' is ludicrously rare, the most tenacious, effects only one in 20,000,000 people, and the most likely to return. After intensive chemo locally starting in 2013, five trips to and living in Boston 14 weeks in 2014 for another surgery and proton radiation by chordoma experts MGH, then four more rounds of chemo, Madison was disease free! She embraced her faith stronger than ever, and gave and received love at a level unheard for a most young adults. Finally, she return to her new normal and return to college.
In November 2016 the cancer returned in the form of liquid building up in the sack around a lung called pleural effusion, with terrifying amounts of liquid increasing each time it was drained. After consulting globally recognized experts, we applied for a clinical trial but she wasn't a candidate because she didn't have a solid tumor, a requirement. In early January 2017 a tumor appeared and she entered the Tazemetostat Phase II clinical trial in San Francisco... 11 trips from Simi Valley, and like magic the monster that was hiding under her bed retreated. The trial meds worked magically became suddenly ineffective in June 2016. After again consulting with globally recognized chordoma experts, Madison was put on a combination of chemo, an immuotherapy, and radiation. That proved to be non-curative and was given a very bleak prognosis. An oncologist said she could 'try' another highly aggressive chemo but with her advanced disease, it wouldn't be curative and the oncologist gave it a 5% chance of slowing it down. Madison decided that she didn't want to destroy the rest of her life with chemo in Sept 2017, but chose to celebrate it embracing people who love her, and letting them love her back. She never considered it a 'fight' because in a fight, there are winners and losers. How does cancer win anything, and would that imply she was a loser?! Madison's thoughts on that here.
She chose to celebrate her life that September, link here... two very brave living memorials that were truly gifts from Madi to her closest friends and family. Sadly Madison discarded her mortal body and spread her angel wings on January 4th, 2018. Leaving no treatment stone un-turned, it became a sad inevitability given the complexity and tenacity nature of her advanced disease. Her departure from planet earth was very graceful, more here and here. Madison refused to accept her disease as a defining factor in her character and she was adamant that when she had to leave, that we never ever say that "she lost her battle". Something Madi had drafted but never posted on Facebook (I don't think, I forwarded from her phone to mine, link here).
Any new readers to this site who want to try and read a book knowing the end of the story with ongoing musing, you're invited to stick around, If you click on the "Archives" here, this is a love story of sorts: a frightened 18 year old young woman learning along her journey and teaching her friends and family new levels of fear (okay, terror too), about spiritual growth, bravery, grace, stubborn determination, and in the grand scheme of things how truly insignificant all of the other racket is in our daily lives. Most importantly Madi taught many of us how intensely we're actually capable of loving, and that any horrible situation can never define who we are.
This website was initially created with the intent to keep family and friends updated during her treatments, versus what would have been endless and exhausting phone calls, text messages, etc. Additionally we asked for financial help: traveling to and living in Boston was very expensive. For everyone who helped, we are grateful beyond words. Thanks for the positive energy and prayers throughout our journey together, her legacy continues, and bless you all.
Peace and Love,
Chris
[email protected]
In November 2016 the cancer returned in the form of liquid building up in the sack around a lung called pleural effusion, with terrifying amounts of liquid increasing each time it was drained. After consulting globally recognized experts, we applied for a clinical trial but she wasn't a candidate because she didn't have a solid tumor, a requirement. In early January 2017 a tumor appeared and she entered the Tazemetostat Phase II clinical trial in San Francisco... 11 trips from Simi Valley, and like magic the monster that was hiding under her bed retreated. The trial meds worked magically became suddenly ineffective in June 2016. After again consulting with globally recognized chordoma experts, Madison was put on a combination of chemo, an immuotherapy, and radiation. That proved to be non-curative and was given a very bleak prognosis. An oncologist said she could 'try' another highly aggressive chemo but with her advanced disease, it wouldn't be curative and the oncologist gave it a 5% chance of slowing it down. Madison decided that she didn't want to destroy the rest of her life with chemo in Sept 2017, but chose to celebrate it embracing people who love her, and letting them love her back. She never considered it a 'fight' because in a fight, there are winners and losers. How does cancer win anything, and would that imply she was a loser?! Madison's thoughts on that here.
She chose to celebrate her life that September, link here... two very brave living memorials that were truly gifts from Madi to her closest friends and family. Sadly Madison discarded her mortal body and spread her angel wings on January 4th, 2018. Leaving no treatment stone un-turned, it became a sad inevitability given the complexity and tenacity nature of her advanced disease. Her departure from planet earth was very graceful, more here and here. Madison refused to accept her disease as a defining factor in her character and she was adamant that when she had to leave, that we never ever say that "she lost her battle". Something Madi had drafted but never posted on Facebook (I don't think, I forwarded from her phone to mine, link here).
Any new readers to this site who want to try and read a book knowing the end of the story with ongoing musing, you're invited to stick around, If you click on the "Archives" here, this is a love story of sorts: a frightened 18 year old young woman learning along her journey and teaching her friends and family new levels of fear (okay, terror too), about spiritual growth, bravery, grace, stubborn determination, and in the grand scheme of things how truly insignificant all of the other racket is in our daily lives. Most importantly Madi taught many of us how intensely we're actually capable of loving, and that any horrible situation can never define who we are.
This website was initially created with the intent to keep family and friends updated during her treatments, versus what would have been endless and exhausting phone calls, text messages, etc. Additionally we asked for financial help: traveling to and living in Boston was very expensive. For everyone who helped, we are grateful beyond words. Thanks for the positive energy and prayers throughout our journey together, her legacy continues, and bless you all.
Peace and Love,
Chris
[email protected]
