Rather than gently leading up to it, we'll shoot from the hip and then try and offer some answers. It's official... Chordoma has metastasized to Madison's chest, and we apologize for delivering this unwelcome news electronically to many people. Needless to say it's been a busy week and were only able to let a few people know organically.
In FAQ format:
This week Madison has had a PET scan in LA, a blood test, another CT scan, numerous calls with doctors, and two college finals. Looking at the computer one evening earlier this week, she rocked back in the chair and said "YES", I got a 94 (on her final). She paused for a moment and said "ya know, I was told I have cancer again last Friday, but was able to maintain focus to pull through finals this week... I'm kind of a bad-ass, right dad?!"
We should know more next week or two. Heads held high, we have confidence knowing we have some of THE best chordoma physicians and researchers on the planet working together, so we take the next steps of this journey full of faith, optimism, and surrounded by...
Love,
The Joneses
In FAQ format:
- So what does this mean? More treatment, TBD. CT and PET scans were taken this week, and next-steps will be determined in collaboration with MGH experts in Boston and our local physicians.
- Travel? Highly likely. Back to Boston... TBD.
- Chemo, radiation, surgery? It's extremely difficult for all of our minds to -not- race down each path of this journey. We'll know more next week and will keep this page updated.
- Are there clinical trial considerations? Yes, to be determined by the experts. There's actually a fairly new (and exciting) trial that may be applicable, especially given the extreme rarity of Madison's cancer. That said, there's explicit includion and exclusion criteria just to make it through each gate of the qualification process.
- So how is Madi? She was cancer-free, now she's not. That's a huge shock: probably Madi and everyone who loves her goes through the stages of acceptance. Numb at first... trying to answer questions that don't yet have answers, like what does this mean? Then sadness and confusion and even a sense of anger... this just isn't freaking fair. Dean's list in college... straight A's, a wonderful human being, loving friends, a job, and then bamm...
This week Madison has had a PET scan in LA, a blood test, another CT scan, numerous calls with doctors, and two college finals. Looking at the computer one evening earlier this week, she rocked back in the chair and said "YES", I got a 94 (on her final). She paused for a moment and said "ya know, I was told I have cancer again last Friday, but was able to maintain focus to pull through finals this week... I'm kind of a bad-ass, right dad?!"
We should know more next week or two. Heads held high, we have confidence knowing we have some of THE best chordoma physicians and researchers on the planet working together, so we take the next steps of this journey full of faith, optimism, and surrounded by...
Love,
The Joneses
