Love, Loss, and Other Four Letter Words
  • Home
  • About Chordoma
  • Photo Gallery
  • Blog - Madison's Journal

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'

​
Picture

    Archives

    December 2021
    September 2021
    August 2021
    May 2021
    January 2021
    December 2020
    November 2020
    October 2020
    August 2020
    July 2020
    May 2020
    February 2020
    January 2020
    December 2019
    November 2019
    October 2019
    September 2019
    August 2019
    July 2019
    June 2019
    May 2019
    April 2019
    March 2019
    February 2019
    January 2019
    December 2018
    November 2018
    October 2018
    September 2018
    August 2018
    July 2018
    June 2018
    May 2018
    April 2018
    March 2018
    February 2018
    January 2018
    December 2017
    November 2017
    October 2017
    September 2017
    August 2017
    July 2017
    June 2017
    May 2017
    April 2017
    March 2017
    February 2017
    January 2017
    December 2016
    November 2016
    October 2016
    August 2016
    July 2016
    June 2016
    May 2016
    April 2016
    March 2016
    February 2016
    January 2016
    December 2015
    November 2015
    October 2015
    September 2015
    August 2015
    May 2015
    April 2015
    March 2015
    February 2015
    January 2015
    December 2014
    November 2014
    October 2014
    September 2014
    August 2014
    July 2014
    June 2014
    May 2014
    April 2014
    March 2014
    February 2014
    January 2014
    December 2013
    November 2013
    October 2013
    September 2013
    July 2013

    Picture

    Categories

    All

Powered by Create your own unique website with customizable templates.