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Ice Fishing and Snowmobiling in Colorado

12/30/2016

Next steps: Madi has an appointment scheduled in San Francisco Jan 26, their first available with the clinical trial team. Next week those physicians return from holiday and will be reviewing the images and reports we sent. Madison mentioned that starting cancer treatment again is kind of surreal.

That said, nothing left to do here and now except go fishing! She had an opportunity to go with close friends (church family) to their cabin in Colorado. While she's been on a snowmobile before, she didn't have a fishing pole. #SushiTonight

They'll celebrate New Years in Grand Mesa Colorado, and return home January 3 : )

Rogue Lung

12/27/2016

As noted below in the thread below, the chordoma bone cancer has metastasized to Madison's right lung. In the spirit of the new Star Wars movie Rogue One, Madison labeled it hers Rogue Lung. While the character in the movie looks like a bad ass, the Force is strong with Madison.

So what's next: What we understand here and now: If accepted in the trial we'll be traveling to San Francisco for a day or two, every two weeks. Madi's planning on staying in school but may need to drop her classes on Monday's and/or Tuesdays.

So how's Madi? Tomorrow morning she's boarding a plane for Grand Mesa Colorado to spend New Years in a cabin with another family who loves her like she's one of their own cubs.

More details as they become available... may the Force be with you.

Love,
The Jones

What Are Clinical Trial Phases...

12/21/2016

... according to the layman

Phase-I: A group of ~60 people (example purposes only). Once group of 20 people receive a small dose of medication. Another group of 20 gets a medium dose, and the last group of 20 receives a higher dose. If results are promising and a Phase-2 is warranted/funded, this phase determines the ideal dose.
Phase-II: A broader group of people, 100-300. All receive the same dose to assess efficacy and safety. If Phase-3 is warranted/funded:
Phase-III: A broader group of people, 1000-2000. Assess efficacy, effectiveness and safety… but some may receive placebos... we think : )

The Trial we’re pursuing is Phase-II, in our opinion the ideal place for her. All imaging and reports are on their way to San Francisco, the first wave documentation required to submit/qualify Madison for the trial.

Next steps: Final Christmas shopping and embracing family and friends over the holiday season!

INI1-Negative - Good News

12/20/2016

Updated December 20: One of the core prerequisites for the clinical trial mentioned in the post below is whether Madison’s ridiculously rare cancer/tumor exhibits the proper DNA traits to be considered for the trial, specifically being INI1-negative.
Looking back: Madison had surgery in Boston in June of 2014. Pathology from that surgery had no INI1 conclusions. Since MGH has performed a deeper analysis of Madison’s tumor and the results were returned today. Her tumor is INI1-negative, so we’re past the first major hurtle getting in to the trial!

FAQs if accepted as a candidate for the trial

What kind of treatment is this? It’ll likely be a pill or an oral solution
Will she lose her (wicked naturally curly post-chemo) hair? Not likely
What's next: Going to San Francisco in the coming weeks to continue the qualification process.

In the Spirit that Bad News Doesn't Get Better With Age...

12/16/2016

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:

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

Ice Fishing and Snowmobiling in Colorado

Rogue Lung

What Are Clinical Trial Phases...

INI1-Negative - Good News

﻿In the Spirit that Bad News Doesn't Get Better With Age...

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