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Back in Boston for Surgery

6/22/2014

 
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Madi, her mom and dad arrived in Boston midweek (last). With 1-2 pre-surgery appointments each day, there was time to do other things. This picture was taken at Harvard Square on Saturday, literally a short block away from the university. We’d been there several times and and seem to gravitate back… such a neat place. 

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If you've ever been to Kona you may have seen the rock formations known as Hawaiian graffiti: 

If you can’t take Madi to the beach in Southern California… send love and the beach to Madi. 

Nicely done! 



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An angiogram is scheduled for June 23, with surgeries to follow on the 24th and 26th. Given there is tumor presence on C2… that vertebrae needs to be removed (C3 and C4 were removed in August 2013), and she’ll have a bone graft from C1 to C5. 

Since C2 is pivotal, Madi’s up-and-down and left-to-right right head movement will be significantly reduced after C2 is removed. She’ll have new battle scars too, which is why plastic surgeons are involved. 3 months after a “plastic close”, we’re told the scars should be close to invisible.



We’ll be updating this webpage weekly during surgery and recuperation in Boston, but will continue to only send email about once a month. Consider bookmarking this page if you would like to stay informed more often than that.

In closing this thread, Madi has the world’s most experienced multidisciplinary chordoma team on the planet, supported by the A-Team and specialists at MGH. The surgery while very complex, is one that MGH does a lot of. 

And finally a quote we read recently… “If God only gives us what He thinks we can handle”… apparently He thinks Madi is a bad ass. 

She is.  

Love,
The Jones family


Gina Nielsen
6/22/2014 06:57:16 am

Sending lots of love and positive thoughts for you all over the next several weeks. <3

Kristin Lindsey
6/23/2014 09:18:40 am

I met this wonderful family at Mass General today in the Family Waiting Room where I learned about beautiful Madi, her battle and her bravery. I am humbled by all of them and will keep Madi, Colleen, Roger and Chris in my prayers. God bless and keep you all.

Lisa Spencer
6/23/2014 12:54:32 pm

Absolutely humbled by what this beautiful & brave young lady has endured and her journey ahead. Praying for Madi every day.

Mark Hammon
6/24/2014 05:07:42 am

Just wanted you all to know how much we all are thinking of you here in Thousand Oaks. Haven't been to a meeting yet today that hasn't talked of Madi and all of the Prayers being sent your way.

Howard Ind. Van Nuys link
6/26/2014 04:11:57 am

We are all thinking of you and Madison. Prayers sent to all of you for Madi's full recovery!
JB


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