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

Two steps forward, one step back

9/29/2013

 
The neurosurgeon phoned today. Given the results of the post-operative MRI, they are recommending another surgery to remove residual tumor. He explained that this path would better poise Madi in the quest to prevent any recurrence.

Our healthcare provider has approved a referral out-of-network!

9/28/2013

 
Another step in our journey forward.... the surgeons and oncologists presented to the Chief Oncologist, who presented to the board/decision makers.  All have agreed to refer Madi's Proton radiation treatment (only) out of the network. 

Starting the Journey

9/27/2013

 
We are working several angles at this point to identify the best treatment approach. We have contacted numerous treatment programs and clinical trials including Mass General's program in Boston, Penn Medicine's Abramson Cancer Center in Pennsylvania, USC, UCLA, Children s Hospital, and Loma Linda here in SoCal. 

We met with Kaiser's medical oncologist Monday 9/23. He confirmed that chemo does not help fight Chordoma.  Radiation is the key to success.  However, it is not just about normal photon radiation, we need proton radiation.  So, our first challenge is with our healthcare provider to get them to refer us out to a hospital that is equipped to handle proton radiation (ours does not). At this point, we are waiting for the doctor to speak with the chief to present the recommendation to the board.

Radiation will be 5 days a week for 6-8 weeks. The side effects of proton radiation will be little if anything until halfway through it. And then, maybe some fatigue, nausea, and a sore throat.

Treatment should start within 6-8 weeks of surgery (8/24), so 2-4 weeks from now.

    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.