Am I a dog or a cat... Bailey certainly seems confused. Madi's moms and me: are we parents or empty-nesters... Bailey certainly seems confused. We dropped our car off for an oil change yesterday. We've been going there for 15 years and the owner asked excitedly "how's you daughter?" As Madi often said... dang-it.
It's always difficult making people so sad and feeling guilty they even asked. I hang on to stories like the one below. Neither the mechanic nor I had a couple of hours for me to go on and on, that it's okay to be sad, but dang... she was awesome and still lives on in our hearts and souls. I did say that, but he has two girls of his own... and can only imagine what he thinks I'm feeling. Then and there, so much pride.
Someone diagnosed with chordoma posted in an online support group last week, italics below:
It's always difficult making people so sad and feeling guilty they even asked. I hang on to stories like the one below. Neither the mechanic nor I had a couple of hours for me to go on and on, that it's okay to be sad, but dang... she was awesome and still lives on in our hearts and souls. I did say that, but he has two girls of his own... and can only imagine what he thinks I'm feeling. Then and there, so much pride.
Someone diagnosed with chordoma posted in an online support group last week, italics below:
Thank you Madison Rose. We never met or spoke, but you’ve had a significant impact on my life. I know of you through your dad. He introduced me and my wife to this (online) group. The story of your journey served as a template for mine.
Like you, I’m from Southern Cal. Like you, my tumor was in the high cervical spine and was treated at a bunch of hospitals including UCSF and MGH. I cannot help but feel that I followed in your footsteps. Laid in the same radiation gantry and surgery tables, recuperated in the same hospital beds, waited in the same sterile offices for the doctors’ frank assessments. I can’t help but think that the statistics my doctors incessantly recited included yours.
When I started my journey, my simple mind questioned why my tumor could not be killed with radiation alone. Multiple doctors insisted that massive spine surgery was the best way to “control” the tumor. Imagine my surprise when the doctors at (omitted) prescribed a single dose of massive radiation with no surgery. I was ecstatic; my wife circumspect. I kept asking why I should submit myself to life altering surgery when I could simply rely on the prescribed radiation. I rationalized that if the radiation did not work, I could consider surgery in the future.
In the end, it was the story of your journey that led me to decide to have surgery in addition to multiple rounds of radiation at MGH. I posited that if a teenage girl could endure it, so could I. Your story gave me the courage to make a life altering decision. In hindsight, it was the right decision. At my last exam, no residual tumor was detected. The spots on my lungs not metastatic.
Now, I seem to live my life in blocks of six months. Waiting for the next round of MRIs and exams to let me know where my journey lies. Know this, your indelible spirit will continue to be part of my journey. Every extra day I have with my wife includes vestiges of you.
We’ve never met. We’ve never spoken. But you are, and always will be, a guiding light. Thank you.
Like you, I’m from Southern Cal. Like you, my tumor was in the high cervical spine and was treated at a bunch of hospitals including UCSF and MGH. I cannot help but feel that I followed in your footsteps. Laid in the same radiation gantry and surgery tables, recuperated in the same hospital beds, waited in the same sterile offices for the doctors’ frank assessments. I can’t help but think that the statistics my doctors incessantly recited included yours.
When I started my journey, my simple mind questioned why my tumor could not be killed with radiation alone. Multiple doctors insisted that massive spine surgery was the best way to “control” the tumor. Imagine my surprise when the doctors at (omitted) prescribed a single dose of massive radiation with no surgery. I was ecstatic; my wife circumspect. I kept asking why I should submit myself to life altering surgery when I could simply rely on the prescribed radiation. I rationalized that if the radiation did not work, I could consider surgery in the future.
In the end, it was the story of your journey that led me to decide to have surgery in addition to multiple rounds of radiation at MGH. I posited that if a teenage girl could endure it, so could I. Your story gave me the courage to make a life altering decision. In hindsight, it was the right decision. At my last exam, no residual tumor was detected. The spots on my lungs not metastatic.
Now, I seem to live my life in blocks of six months. Waiting for the next round of MRIs and exams to let me know where my journey lies. Know this, your indelible spirit will continue to be part of my journey. Every extra day I have with my wife includes vestiges of you.
We’ve never met. We’ve never spoken. But you are, and always will be, a guiding light. Thank you.
To the gent who posted it, thank you sincerely for this gift. Fyi we're going to open up our home in Simi Valley on March 18 at 2PM... this time a memorial celebration versus a living celebration. We'd love to meet you and exchange hugs.
Love,
Chris
Dear Madi - You can no longer suggest edits or omissions on this page :-) While you may be embarrassed, I feel that this is a story worth sharing. I left Brad (the mechanic) feeling sad which certainly wasn't my intent, but I walked out feeling so proud of you... too bad Brad and I didn't have a few hours... I have a few stories that might have left him feeling better than he did. Leaving there I felt like that geek in the Verizon commercial, like holding my arm out to the side and dropping the mic it on your behalf. I know that's not who you are, and we're not claiming any credit: you inspiring people had nothing to do me or your moms, in fact I feel a lot of it came from the loving people at The Place, your XMO experiences igniting your spirituality and passion to pay-it-forward, and your support group peeps and therapist: They all helped catapult you in to a remarkable, insightful, giving, and spiritual young woman so wise beyond your years. Thanks for being you Shug, we are so proud of you! That said, I'm pondering going back to work after XMO next week or maybe after the Chordoma Conference in Boston next month. Angela is thinking I should grow a ponytail in the interim, but I'm thinking about sporting a man-bun. Bailey is happy and healthy, but she does have her identity quirks as pictured above.
