As noted in the post below, Madison has lost the use of her legs and is adapting to a new normal. Losing leg function was a blow, no sugar coating it but was one of the potential realities along the latter part of this journey. Her pain is being managed well and it's been a quiet week, all things considered. Mama bear Colleen is here tonight and she and Madison are just hanging out. Madi's, her moms and dad are all adapting as well as can be expected given the circumstances.
Madison received a card this week from someone she met a few years ago in Boston while she was receiving proton radiation. He's apparently been following her story and wrote in the card:
"Madi,
I will always cherish meeting you. Your spirit, fight and joy were evident in your smile and presence. I remember telling my wife the day I met you how amazing and how strong you were. I knew the value of that moment immediately and it has stayed with me since. From what I saw in the videos and on the blog I knew you have touched so many moments and memories for many people".
Madison cried tears of joy. This further reinforced something that (only) she didn't fully comprehend until perhaps very recently: her bravery, grace and stubborn determination has inspired so many others. Madison is a member of a private online community: everyone there is impacted by chordoma. When it was announced that current treatment options have been exhausted, many people in the online chordoma village sent her some very touching cards. During the celebration of her life, the XMO Team and her Church family put together beautiful roses with dozens of hand written cards. Thank you all, we will cherish them forever. A distant relative King Jones articulated it s very nicely in the October archives, link here (towards the bottom in blue italics).
All of them were a solid foundation to Madison feeling she's inspired so many, but perhaps only recently has she come to accept the true impact that she will leave in her legacy.
Love,
The Jones family
Madison received a card this week from someone she met a few years ago in Boston while she was receiving proton radiation. He's apparently been following her story and wrote in the card:
"Madi,
I will always cherish meeting you. Your spirit, fight and joy were evident in your smile and presence. I remember telling my wife the day I met you how amazing and how strong you were. I knew the value of that moment immediately and it has stayed with me since. From what I saw in the videos and on the blog I knew you have touched so many moments and memories for many people".
Madison cried tears of joy. This further reinforced something that (only) she didn't fully comprehend until perhaps very recently: her bravery, grace and stubborn determination has inspired so many others. Madison is a member of a private online community: everyone there is impacted by chordoma. When it was announced that current treatment options have been exhausted, many people in the online chordoma village sent her some very touching cards. During the celebration of her life, the XMO Team and her Church family put together beautiful roses with dozens of hand written cards. Thank you all, we will cherish them forever. A distant relative King Jones articulated it s very nicely in the October archives, link here (towards the bottom in blue italics).
All of them were a solid foundation to Madison feeling she's inspired so many, but perhaps only recently has she come to accept the true impact that she will leave in her legacy.
Love,
The Jones family
