On Dec 24th Madison had therapy to work through the challenges she has swallowing liquids or food. Things remain very tight so she's still g-tube feeding, and working to strengthen all of the muscles that are molested during an intrusive surgery. All things considered, she's doing quite well, the patch/graft looks great!   

Happy Holidays and Merry Christmas!!!

Fun Fact: Amazon has a program called "Amazon Smile". There are no hooks, no fees, no spam, and it's amazingly simple. Once you register your Amazon account at https://smile.amazon.com and select your favorite non-profit charity... your church as one example, Amazon donates 0.5% of every purchase to that charity. Free money!

If you are an Amazon shopper and don't have a favorite charity, we ask you to support ours, the ​Chordoma Foundation. 

Fun Fact: Just one of the many CF accomplishments has been testing all FDA approved drugs against chordoma...  over 1800 of them. Ponder that approach: Rather than finding a pharmaceutical company to invest hundreds of millions of dollars from research through the all stages of clinical trials to develop a cure; does an existing FDA approved drug already exist that would be effective against chordoma? The answer is yes, numerous show promise. What a concept! Given chordoma affects only one in a million like Madison, there would no incentive for large pharmaceutical companies to even consider a new drug.   

Madison and her family request that you please watch a two minute video at this link about the founder of the Chordoma Foundation and executive director, Josh Sommer. He was diagnosed in 2006 at age 18... just like Madison. 

If you don't already have a favorite charity and are Amazon shoppers (who isn't, right?!), Madison and her family ask that you please take 60 seconds today, and connect your existing Amazon account via https://smile.amazon.com, to the Chordoma Foundation: a non-profit organization committed to improving the lives of people like Madison affected by chordoma, while leading the search for a cure. 

Again, no hooks, no fees, no spam, literally free money!  This Amazon program donates 0.5% of every Amazon purchase directly charity... it's that simple! 

Looking back: in October Madison had major surgeries to repair a hole in her throat from a titanium plate connecting vertebra C2 to C5. The good news: she no longer needs the hardware since the bone graft looks good! The bad... the plate was visible when she opens her mouth and says "ahhh".  The surgeries... tissue from her wrist was harvested with arteries, then both were stitched to her throat to patch the hole. 

On Wednesday the 16th we met with ENT surgeon Dr. Alice Lin, who said the patch looks great, is "completely healed". Next we met with neurosurgery PA David who saved the titanium plate for Madison, pictured.

On Wednesday December 23rd  Madison will have a video swallow study. Given she hasn't eaten since October food is smelling especially good. Next steps TBD, likely therapy to strengthen everything effected. 

Over the course of treatments, Madison's hairdo has transitioned from blond and straight in 2013, to bald as a cucumber. Then short and sassy in 2014, back to bald and beautiful after more chemo.  

It's been a year since her last chemo treatment and she is rocking it, waaaaaay curly and wicked cute! Yes... that's a "new normal" ... naturally curly. 

Our family is so touched and thankful, truly to our cores. For Madison... for our family to have so many loving people following her journey, sending positive energy and prayers. We are blessed to have each of you in our lives. 

Love, 
The Jones'

​The PICC line is finally out, thread below, no more IV meds needed!! Madison is down to only one hose, the feeding tube. 

She is still having significant difficulty swallowing. We met with Paulette today, a great speech/swallow therapist in Woodland Hills. Besides that fact that Madison hasn't eaten since October 18th, feeding tubes are an incredible inconvenience for her.  The syringe pictured holds 2 ounces: simple math, 64oz of water a day means 32 syringes... that's just water. Another 42oz of liquid "food", an additional 21.  

Amazingly Paulette has a similar​ bone graph in her neck, hardware too. Since she's been down in the same ditch, who better to help others climb out... we are very pleased! Suggested by Paulette, a video swallow test is being ordered to ensure it's only weak throat muscles. Besides the fact that food tastes really good and Madison really misses it, having 50+ syringes daily is incredibly inconvenient, and makes road trips interesting. That said, road trip! 

Looking back a year, we had the privilege to see Nick Vujicic speak...a man with no arms, no legs, and no worries. You can read more and see pictures at ​this link. Nick is a huge supporter of XMO, Extreme Mobility (extreme sports) for the blind. Madison was a counselor there this summer. Despite extremely long days, she commented that was the most rewarding experience of her life. 

Looking back a week... ROAD TRIP! Madison packed cans of food, bottles of water, and syringes (a girls's gotta 'eat'). She and congregation members/elders from her church drove to Loma Linda to support XMO and see Nick speak again. There's a very brief video at this link. Nick speaks to the power of HOPE... "YOU WILL GET THROUGH THIS". 

 
 

Madison received a phone call late yesterday afternoon... "the doctor wants to see you at 10 AM in the infusion center", an unusual request to be summoned to the doctors late in the day, for the next morning. Hmmm

We obediently arrived, checked in, and took a seat. The desk nurse's phone rang a few minutes later: he looked at Madison and said "yes doctor she's here." After a pause he added "sure, I'll set you up in a room so you can speak privately. Gulp.  

Not bad news, but good news!. Madison's bloodwork looks good, she'll be off of the last IV med on Monday. The purpose of meeting in the infusion center was to avoid the co-pay associated with an "appointment" meeting in her office. The reason the doctor asked for a private room was because she didn't want to meet in a pool of people being infused. 

A PICC line like the one pictured, offers artery access for IV meds without requiring needles... a happy thing. The two ports are hanging out of Madison's arm and ultimately wiggle out of the sleeve trying to flop around, an unhappy thing. We tried using a staple gun but that didn't work well. 

So, the PICC line comes out Monday as well, right after the last antibiotic and yes, kidding about the staple gun. 

We hope everyone enjoyed their Thanksgiving and a nice long weekend. We have SO much to be thankful for... and are truly blessed. 

Love, 
The Jones'