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Latest Treatment Results Are In

6/22/2017

 
Since Madi's May appointments at UCSF, her chest and abdomen can get really really sore, so much so it would imply that the new meds perhaps lost effectiveness. Not the case. (<- read that again... not the case). But we gotta tell you... the past few weeks have been somewhat of a thrill-ride. The more she does, the more exposure to pain in her chest/abdomen. A few down-days didn't seem to help and severe pain in the chest implies to any lay patient and parent that something may very wrong ... getting  a plan-B is in order... which we have, though process being IF the meds lacked effectiveness (which we learned this week they haven't), we'd know which path to take on the next steps of this journey. 

In the middle of XMO camp this week, she took a 24 hours turnaround trip to UCSF on Tuesday. The pain is likely situational/positional, and the principle investigator/physician remains very pleased with the effectiveness of the trial meds. If Madi overdoes it or even sleeps wonky, her pleura (metastasis location) can flare up intensely with internal swelling and whatnot. So what's a girl to do...

...Return back to XMO winter camp again Tuesday night as a counselor leading blind and sight impaired youth. Monday, A water park. Tuesday, hiking (while Madi traveled to and from SF... not sorry she missed that one : ) Wednesday, boating and knee-boarding at Castaic lake. Today, surfing and tomorrow Friday is Go-cart racing.: the blind kids race the clock while a counselor coaches them via earbuds in their helmets. Then, the counselors race the clock. Fair enough, aye?! Not! The counselors visors are blacked out so they're racing blind as well. I think archery is in the agenda again this week... what can go wrong?!


Funny thing... if mom or dad told her she couldn't go... she wouldn't not go. Her stubbornness is what helped fuel her tenacity to plow through chemo and radiation, and recovery from the various surgeries over the past few years... the Unsinkable Madi Brown.  

Thanks for taking this journey with us, and for the prayers and positive energy!
Love, 
​The Joneses


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Montana MadDawg

6/13/2017

 
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Madi is on day-7 of her trip in Montana visiting her friend Kiira, returning tomorrow. A few pics of absolutely amazing beauty! Truly OMG incredible!! Madi took the pic above from the rear seat in the canoe. Kiira is blind, a beautiful soul, and taught Madison to hear and to smell so many wonderful things.  
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On Sunday Madison begins another tour as a camp counselor for a week, more in the thread below about leading blind kids and young adults. 

On Monday evening she blasts up to UCSF for doctor appointments, the standard blood and EKGs, then turns around Tuesday evening and rejoins the blind and visually impaired youth, and will remain with them through Friday, only missing one day of
XMO (Extreme Mobility). They'll be surfing, playing at a water park, knee-boarding behind boats at Castaic Lake, hiking, etc. 

Quick Update

6/6/2017

 
Tomorrow Madison travels to Montana for a week to visit a close friend. 

She'll be home for a couple of days and then will take another tour as camp counselor at XMO leading young blind and visually impaired athletes (to be) at the 2017 Summer Camp. This is her fifth stint as a counselor for XMO: she comes home pooped after each but apparently these are among THE most rewarding experiences of her life. Pictures from Feb 2017 summer camp at ​www.madisonrosefund.com/blog---madisons-journal/archives/02-2016. 

When she's done with that, she's planning on returning to Montana but for a week of river rafting with other people who have been impacted by cancer.  

In the middle of everything mentioned above, another trip to UCSF for doctor appointments.

The pic below was taken over the past weekend at the Getty museum in LA with very dear friends....

...three beautiful souls. 
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