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Friday Update

9/29/2017

The church service last weekend was outstanding and while several people spoke, there was a woman who told a story about Madison being ill, needing oxygen, and heading to her room for a tank. If you go to THIS LINK and fast forward to 1:07:35 (an hour and seven minutes in), you can hear her tell the story about Madison. Very touching and accurate description of Madison's character. As a reminder, she wouldn't -not- go be a counselor at the EMO Winter Camp in Colorado, despite the angry metastasis in her chest that she self-drained... the fluid building up at a staggering rate. Madi didn't socialize her disease... it's not about her, but all about the blind athletes. Given the blind youth in her room were visually impaired or completely blind, who can see her drain the fluid, aye?!

Our friend Bambi put together a video too, link HERE. Madi's step sister Heather created a video of Madison's life as well, link HERE. Both are awesome, thank you Heather and Bambi!

An Incredible Weekend, Beyond Words...

9/25/2017

September 26: we added pictures (below) from Madison's church, "The Place". They videoed the celebration of Madison on Facebook, you can play it at this link. Madison's mom Colleen, her husband Michael and so many others did a magnificent job with the celebration, all of the splendid food, the magnificent flowers, the venue etc.. beyond words. A sincere thank you from her family to all of the people who put it together... amazing.

On Sunday there was a small gathering of loved ones who congregated in a casual setting, getting to spend time talking with Madison, versus waiting in line at the church to only have a moment with her. Some relatives traveled in for the celebration as well as friends who grew up with Madi. Had we opened the house to everyone who loves her, there wouldn't have been the intimacy needed for family and friends who are in her daily life... so important to spend time quality time with her. Chatting later last night with Madison, she mentioned the words love, celebration, party, and pre-funeral... and asked the question what was it? The genuine love and adoration was so obvious on Saturday at The Place, and on Sunday at the casual gathering.

Hearing people speak on Friday night and the outpouring of love all weekend, I think she has a better understanding of what a true inspiration is to so many people during her journey navigating this complex disease, as well as her enlightened spiritual journey.

From XMO: a beautiful floral arrangement with about 50 notes from people she touched who are either blind athletes or volunteers involved with XMO. Call the weekend events what you may, (I feel) they were her gift to all of us.

Saturday, A Grand Celebration of Madison's Life...

9/23/2017

... and she was there! It was a remarkable celebration of Madison, coordinated with Madison's mom Colleen and their church family. There was worship, inspirational songs, some people told stories and a few people actually made it though them without shedding a tear (a very few... quite touching).

Love,
Madi's Church and Jones family.

Canine Comfort

9/22/2017

Today was another low-key day with a nice long nap, and then a brief visit from a cousin who flew in from Utah.

Pictured... her dogs seem to sense a disturbance in the force... if Madi snoozes, so do they

Wednesday - No Real Updates

9/20/2017

Tuesday Update...

9/19/2017

Hello everyone - Madison spent the night at her moms last night and returned to dads this morning about 10. Madi's home-care nurse called checking in several times, ordered supplies, so today was mostly a down day.

Madison has participated in a "Young Adults With Cancer" group. Back in 2014, she was the newbie who was embraced by people in the group who had already walked the path she was facing... chemo, surgeries, radiation, and all of the emotions associated with the C-word. Since then, Madi has been a shepherd of sorts, helping lead other young adults who were newly diagnosed. In January 2015 Madison was featured as a "Survivor Story", link HERE.

Today a couple of people from her group visited... what a special gift from her peeps/peers.

Improving the Lives of People Impacted by Chordoma...

9/18/2017

... while leading the search for a cure. The Chordoma Foundation is by far the most impressive non-profit organization we've ever interacted with. To learn more about the CF, we strongly encourage everyone following Madison's journey to download the CFs 'about us' booklet from this LINK.

So how is Madi? Last night she went over to moms and today they had pedicures. Madison came home for a bit in the afternoon and went over to moms again tonight. Nausea appears to be a thing of the past, and Madi's pain remains well managed.

Again we encourage you to learn more about the Chordoma Foundation and their innovative approach to improving the lives of people impacted by chordoma while leading the search for a cure. They have stood beside our family since 2013, and we'll be organizing a fundraiser in the near future... details to follow. Don't forget to download the booklet... you might recognize a picture or two at this link.

Love,
The Jones Family

Pain Managed Well and Nausea Appears to be Thing of the Past

9/17/2017

The quest all along has been to ensure Madison's pain is well managed and without any nausea. Last night she slept decently all things considered, and went almost eight hours overnight without meds and slept until noon. :-) There are long acting 'baseline' meds that have been steady increased over time, reducing the need for fast-acting relief every two hours. Imagine waking up every 2-3 hours due to excruciating pain... all night long, which is avoidable. Madison has a great pain management team and gets decent sleep, considering everything going on.

Church This Morning and Some Church Family This Afternoon

9/16/2017

It was a good day today, one that left Madison a bit tired but happy and fulfilled! She went to church this morning and was greeted extremely warmly. After church a number of friends followed her home. They talked, laughed, played games... a perfect afternoon. After they left Madison decided a nap was in order... so did her dogs.

An Afternoon at the Beach

9/15/2017

Hello all - Madison's been camping at the Carpinteria State Beach since she was an infant. Last Friday after an extremely long week we'd planned to go Saturday. Unfortunately pneumonia, so off to UCLA for four days of antibiotics and the news (thread below) about the lack of viable treatment options.

So today Madison got to spend a few hours at Carpinteria. The sounds and smells of the ocean have always been memorizing. Madison's blind friend Kierra (sp) demonstrated to her that if you close your eyes and use your other senses, amazing things can happen. While on a hike up to the cross, Madi stopped walking and said "just close your eyes and stand still for a minute". The volume and scents were amplified... the sound of the breeze blowing through the bushes, and the scent of nature. Today was that kind of day... a good one. Pictured below, Madi, her cousin Hannah, and Angela.

Tomorrow, planning on church and after that, she'll hear which way the wind is blowing.

Be sure to click the "Previous" button to see an important September update.
Love,
The Jones Family

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