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Hallelujah!

4/28/2016

Chordoma being extremely rare are also sneaky buggers and like to recur locally, and metastasize. The surveillance protocol is an MRI every 3-6 months at the primary tumor site, and full spinal MRI including neck, thoracic, lumbar, and chest x-rays annually.

Moments ago we got the results another one year follow up: All MRIs and x-rays show no sign of recurrence/regrowth, or metastasis.

Anywhere.

Hallelujah!!

April Update - Minor Procedure Completed April 25th

4/26/2016

The head/neck surgeon completed a minor procedure to inject some secret sauce in to Madison's vocal cords yesterday. By this weekend she may have some indication that things in her throat that are not currently working... may start to work. She's not supposed to speak for another 24 hours to allow the meds to soak in versus leak out.

To review: Madison is still unable to eat food or drink water orally... it all goes in via a syringe through a feeding tube. While incredibly inconvenient, Madison plows through it... about 50 syringes a day. When she went to to Colorado (for a week ... see February 2016 in the archives section), she made arrangements to get a case of liquid 'food' there ahead of her.

Next steps: The short term focus has been on the procedure performed yesterday, so Madison is currently in the 'wait-and-see' mode. If she's able to consistently swallow without aspirating in to her lungs, we perceive that as a very good sign and ideally she'll progress to applesauce and other thicker foods in a quest to regain the throat muscles and reflexes required to simply swallow a bite of food. So this phase we feel will determine next steps.

This past weekend the family went camping at the beach. It was very windy Friday evening, beautiful Saturday and Sunday! This picture was taken Friday evening with the wind coming from behind Madison, matting her hair to her face.

Madison's hair used to be straight, and lighter. Post-chemo... it's now a tad darker and wicked curly :-)

Thanks for following along... we'll be posting more next week.

Love,
The Jones'

Hallelujah!

April ﻿Update - Minor Procedure Completed April 25th

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April Update - Minor Procedure Completed April 25th