Back in Boston for Surgery

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.

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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