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Midweek Update

11/28/2017

 
Hello Madison fans and followers. As you've likely read the base pain meds Madison prompts a lot of sleep. She's always been a night-owl of sorts... still it staying up until 11-12pm even on school nights, but often sleeping until 1-2pm these days. Today she came out of her room about 10:30 fully dressed asking if we can still go to the beach. Oh yea! Dad, stepmom Angela and Madi headed to Carpinteria. First stop was a coffee shop, then a stroll down the main drag poking our heads into antique shops, the Soap Store, and several other shops. Of course Madison was in her wheel chair for most of it, but she was able to walk around in the stores. We made it to the beach and set up chairs and blankets. It was really quite nice, just a tad chilly, but blankets easily fixed that. All absorbed the hypnotic sights and sounds the ocean offers... Madison brought a book and Angela had magazines. As we were packing up dad took a pick of Madi and a beautiful sky... the picture doesn't do it justice. 

The tail-end of last week was rotten... no sugar coating it, but she bounced back! Hearing the words "can we still go to the beach" was beautiful music!
 
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Weekend Update

11/26/2017

 
Unfortunately Madison was feeling rotten on Thursday and while she felt a bit better on Saturday and Sunday, the hot-air balloon ride wasn't in the cards for this weekend. Dang! 

Happy Thanksgiving

11/23/2017

 
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We just wanted to say we're SO thankful for the love and friendship. Happy Thanksgiving!!!

Madison and her mom are feeding the homeless at a church function today, then supper with local family later this evening. Sunday Madi, mom, and BFF Nathan are planning that hot-air balloon ride. Madison being on oxygen beneath a huge flame... what can go wrong?! 


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All kidding aside, they've obviously done their homework and the company doing the balloon ride is fine with the oxygen on board, so no worries!

We'll post more Sunday, ideally with better pictures than these :-)  Our sincere thanks, love, and appreciation to all of the people who follow along, and for you love, prayers and emotional support
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The Color Run

11/19/2017

 
The Color Run in Ventura was an awesome experience for Madison! At first she play it somewhat cautious and as you can see in the pictures, she threw that in to the wind. She had a very special surprise: her physician and her nurse surprised her at the starting line and hung out to watch her finish.

Sincere thanks and kudos to Julie, Deanna, Theresa, and Agi (in her young adults with cancer group) peers for making this magic happen. It was truly amazing!!! Another very touching thanks to Madison's medical team to come cheer her on. By the time it was over, they all had green hair. 
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Pain Remains Manageable!

11/16/2017

 
Madison hasn't had a bout of intense pain since a week ago yesterday, a happy thing. Pictured below, a trip to the bookstore. Madison likes to walk when she can and sit when she needs to. Most of the time she pushed the wheelchair with her oxygen tank. On Tuesday she decided to she wants new shoes, so off to the TO mall. Last night she and a friend went to Target where Madi scooted around in one of their motorized carts. Next stop, to Jamba Juice for a smoothy and then finally a donut shop... chocolate with candy sprinkles. 

This Saturday she's planning on participating in the "Color Run", a 5k. A couple of women in her young adults with cancer group will be pushing Madi in her wheelchair. It looks like it'll be a hoot, link
HERE, pic below. 

This has been one hell of a journey and Madi will gladly take as many good days as each one is offered. Thanks for the love and positive energy!

Love, 
​The Joneses


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Weekend Update

11/12/2017

 
All things considered, a very good weekend! Pain was easily managed and "really not too bad...best it's been in weeks"! 

All Things Considered, A Good Week

11/10/2017

 
Madison and her team have been managing her pain quite well. While it crept up some on Wednesday, it was very manageable and didn't require an increase of her base (long lasting) meds. 

Madison expressed some interest in going to a bookstore this afternoon. She's planning on going to her moms for the weekend, church tomorrow, and I suspect she'll be surrounded by her peeps most of the weekend  

Out Of Hibernation Mode

11/7/2017

 
​Hello Madison fans and followers. The increased dosages of the long-acting meds that Madison started on Saturday had kicked in on Monday, so smaller doses of the fast-acting meds were required throughout the course of the day. As those were reduced, she came out of hibernation mode Monday afternoon and for the first time since Friday night, she stayed out of bed most of the day! 

Weekend Update

11/5/2017

 
Unfortunately and suddenly the pain started to increase quite a bit Saturday morning. After a discussion with Madison's medical team, we've ramped up the instant acting meds, which basically puts Madison in hibernation mode. Her team increased two of the base level (long acting) meds, but each will take one and two days to 'kick in' and be absorbed in to her system. So, we'll be giving Madi the instant relief meds every two hours and then on Tuesday, we'll throttle them back to slowly bring her out of hibernation mode. All of this of course is with the guidance and oversight of her medical team. 

Hanging with Madison this morning while she was semi-awake, her dog Bailey wanted up on the bed. Madison usually loves Bailey up on her bed, but not this morning as Madison was feeling rotten. Bailey has this quirky voice... kind of a light bark mixed with some dog-crying/whining. Madison said "okay, she can come up but please don't let her walk on me".  Once Bailey gets her way, she transitions from persistent to cute. 

We'll post another update on Tuesday or Wednesday. 

Love, 
​The Jones Family
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Back In Simi Valley

11/3/2017

 
Madison and Colleen returned from Carlsbad Thursday and by all accounts they had a really good time. Unfortunately the hot-air balloon ride was canceled on Tuesday due to rainy weather. 

Below is a pic from there final afternoon spent on the beach soaking in the sun and the cool ocean breeze. 
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