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Survey Says! 

2/27/2017

 
Significantly less fluid!! Significantly! Draining the fluid surrounding the rogue lung every 4 days offers a basis for comparison, and we've watched each increment of four days net less fluid.  

After taking the clinical trial meds for just four short weeks, remarkable results! Over a 1/2 gallon was drained in December... in one procedure. Yikes! Madison the meds January 31, and less and less drained out. Today, less that a tbsp. If have a strong stomach and want to see the actual results, viewer discretion strongly advised... an actual
picture. 

There was a short family debate, how can this possibly be?! We thought perhaps the tube might be clogged in her chest?  Ultimately since we saw less and less fluid build-up needing to be drained out, we decided to believe our eyes, hallelujah!  That said, we will trust but verify... an ultrasound may be in order. 

Madi and her mom are headed up to San Francisco for another jam-packed couple of days, 7 appointments starting Tuesday morning. They'll return home Wednesday with another two week supply of meds, then rinse and repeat in another couple weeks... back to San Francisco. 

We humbly thank our family and friends for all of the prayers, support, and positive energy... and we obviously thank Him for the continued blessings. ​
Hallelujah! 
​
Love, 
The Jones family


Frolicking in the snow 

2/25/2017

 
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XMO Camp

2/23/2017

 
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"Yesterday is history, tomorrow is a mystery but today is a gift... that's what they call it a present".
Kung Fu Panda

Three of the many outstanding camp counselors at XMO winter camp, Extreme Mobility for blind and visually impaired kids and young adults. You can see more about that non-profit organization here and at their FB page here. 
​

XMO is an outstanding organization and as you can see in this pic, Madison is having the time of her life! This is her 4th time as an XMO counselor and each seems more rewarding to her that the last. 

You can see Madison below, the beautiful soul wearing a black long-sleeve shirt with yellow writing.  

2017 XMO group pic below. 
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Now then! They're all beautiful souls... 

Leading blind youth on skis, teaching them to drive snowmobiles... front seat a the controls, not being driven around! There's a sleigh ride planned, worship services daily, archery, etc...  One can only imagine the sense of reward showing blind youth that Yes, you actually CAN drive a snowmobile, you CAN ski... here's how, you got this....  Seeeeee !"  During Summer camp they were driving go-carts and water-skiing. How fun for all! Photo above, Madi is the front row, 6th in from the right.  ​

So medically, what's the latest?! Looking back to December when the rogue lung got all pissy, fluid needed to be drained regularly. The disease seemed to be progressing and at one point there was two liters of drained out... yikes. A catheter was surgically inserted so Madison could self-drain, versus going to the hospital for that procedure weekly and she self drains ever four days. Starting the clinical trial meds January 31, our lay non-medical eyes see what they see every four days...

...a tad less fluid from the prior four days, and from the four days before that! Now we're not doctors but have become expert speculators. Seeing less fluid being drained implies less fluid is building up, implying the disease is not progressing, suggesting to the lay non-medical Jones clan the disease may be regressing thanks to the new meds. We know there is no pill that will cure cancer but appearances suggest that her clinical meds are helping manage the rogue lung in to submission! 

Thanks for your prayers and positive energy! 
Love, 
The Jones





Ditching School

2/20/2017

 

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As noted in the February 9 thread below, Madison's is at the XMO winter camp in Colorado as a counselor. Link to some 2016 pics of Madi here. More 2017 XMO pics besides this one are forthcoming. 

By looking at current pictures you'd think she was faking the
rogue lung scenario. 

Next step: She's in Colorado for a full week, Sunday 2/19 through the 26th, returning back to SoCal. On the 27th traveling back up to San Francisco for another few days of doctor appointments as outlined in Trip #4 below. 




San Francisco - Trip #4 Complete

2/15/2017

 
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Madison and her mom drove up to SF on Monday. Yesterday was a full day of appointments... seven of them squeezed in to one day. 
  1. Meet with the doctor
  2. EKG
  3. Give blood, then take her morning meds. Now wait an hour
  4. EKG
  5. Give blood. Now wait two more hours
  6. Give blood. Now wait three more hours
  7. Give blood, and then gets a fresh two week supply of meds
So yes, a full day of fun. She takes her computer with her and can get homework done. In this pic she's clearly not doing homework... perhaps annoyed or bemused by the paparazzi... love that 'knock-it-off' with the camera smirk, refusing to look up. 

Love the snow boots too : - ) ​

To Quote a Colleague...  "She is Such a Badass"

2/9/2017

 
We see a lot of people follow this blog/journal but still wonder and worry, how is Madison today, what are her days like, what's next. A colleague asked dad today... is she okay, what's next, how does she spend her days. 
  • Today Thursday - Homework
  • Friday to Sunday - Strongly considering going to Mammoth Mountain
  • Next week - Back to San Francisco for two days that includes consults, check-ups, blood-work, EKGs, and to get two more weeks of meds. And more homework. 
  • Week after next - Going to Colorado as an Extreme Mobility (XMO) camp counselor leading blind youth on snow mobiles, skis, etc. More ​here.  
The colleague commented "homework, she's still taking classes too?"  "Yep".

He asked about XMO
(link here​). This will be her 4th time as a counselor in the last two years, two winter and two summer camps. With an ear-to-ear grin he replied "she is such a badass!"  

Oddly Madi doesn't seem to feel like a badass or like a brave warrior. That said, she doesn't do pity parties and refuses to let this disease and recent metastasis define her... which by definition makes her a badass. 

One in a million...

2/8/2017

 
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The New Meds

2/5/2017

 
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All things considered Madi is tolerating the new clinical trial drug well. Given all of the side effects we hear on TV commercials for other prescription meds, it could be a lot worse... especially since what Madison's taking are chemo pills. 
The whole family finds it somewhat funny that the warning label on the pill bottle states "HANDLE WITH RUBBER GLOVES", but then she pops a pill on her tongue and swallows it. Hmmmmm. The manufacturer clearly wants to protect her thumb and index finger. 

So hows Madi... 90% confident in the med's effectiveness. Being extremely bright and cancer-
aware, probably 15% worried about the what-if's, and the what's-next, etc. Exactly! None of this adds up. 
 

Next trip to San Francisco is in a week. They'll take a bunch more blood throughout the course of the day, EKGs, and send her home with two more weeks of meds... use rubber gloves , batteries not included, action figures sold separately. That said...

... the Force is strong with our Rogue Lunged Wonder Woman. May the Force be with you as well. 

Love,
The Jones'
 

There's No Place Like Home

2/1/2017

 
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Whelp, we made the decision to fight the traffic out of San Francisco last night...  there's no place like home. There's no place like home. 

​Looking forward, we're filled with unwavering faith, mountains of hope, and embrace the Chordoma Foundation for their passion helping drive and socialize some of the amazing discoveries and science surrounding current and future therapies for this rotten disease!

The liquid from Madison's chest extracted last week was sent to the Chordoma Foundation Biobank (thanks Patty!), cells were isolated and put in to a culture for a cell line. Besides having a mouse model (more here), there is also solid potential for a cell line. As mentioned in an earlier post this isn't to try and break the mouse and then then try to fix it to cure Madison... the science is not there. #Yet. This is an ongoing quest by leading researchers to learn more about treating and ultimately curing this tenacious cancer.

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