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May 17th, 2017

5/17/2017

 
G'day all, a brief recap: In late November the chordoma cancer actually metastasized to her lung and chest, prompting an alarming (okay a bit terrifying) amount of fluid that required a catheter (a drain). The amount of fluid was increasing visibly and during it's peak, 2 liters build up over a 10 day period (exactly, 2 liters... holy sh!t Batman). 

In late January she started a clinical trial, "Tazemetostat". Traveling to San Francisco every 14 days, she had extensive blood-work done, EKGs, and a CT scan at the 8-week mark. Here and now she's 15 weeks in to the trial. As we watched the amount of fluid build up prior to the meds, the misbehaving buggers (tumors) appear infinitely less angry, and the watch-items her shrunk ~25%, so medically  labeled as "stable". At 30% or more, it's considered "remission". Next week another trip to San Francisco and during this visit, another CT scan. Her friends and family are hoping and praying for a radical remission with no impacting side effects. 

Given the buggers stopped the fluid build-up, Madison had the catheter removed from her chest/lung her last week! It was a big pain in the back afterwards but she's got some bounce back in her step now... actually went to the gym last night and gave a treadmill what-for!


Picture
Madi posted this picture on Instagram... (her profile is madirose_j if you want to follow her... and you didn't hear that here : ) 

The power of the Force is clearly very strong in this beautiful soul, helped by the people who love and pray with and for her. We'll post an update early next week. 

Thanks for the prayers, positive vibes, and for walking beside her in this journey. 
Love, 
​The Joneses


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