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

February 23rd, 2017

1/31/2016

 

Throwback Thursday

1/21/2016

 
A little less than two years  Madison started specialized treatment in Boston... a long road. She and her family were privileged to stay at the American Cancer Society (ACS) Hope Lodge for 5 of 14 weeks while Madison was receiving treatment in Boston, and had the opportunity to attend an ACS fundraiser. 

Today Madison was a featured speaker speaking kicking off the ACS 2016 'Relay for Life' in Camarillo California, 

Now and them... paying it forward for the Hope Lodge and American Cancer Society. 
Picture

Throw-Back Thursday

1/14/2016

 
Picture

Yes, that is a real police care and yes, that is Madison... about 2005

So how is Madison today? Hungry! She hasn't eaten since October 19th! Tube feeding is a major hassle, 60 syringes in to her feeding tube daily. 

She re-started college on Monday, another wooo hooo milestone! She is also better able to swallow ice chips and while perhaps seemingly insignificant, it's a huge step forward!   

She's taking mostly the same classes that were ripped away from her last October. but all new people. Dad is trying to convince Madi to walk up to the cutest guy with the most tattoos and say "why are you staring at my scars!" He'll of course deny it and feel bad wondering what happened. Next step would be "tattoo's are for sissy's, warriors have battle scars.... how about some lunch!" Over lunch, "really, you're going to eat in front of me, and pull out her feeding tube".  She hasn't subscribed to that approach yet, but it'd be a highly confident ice breaker :-) 

Oh, the pic. We were at Pierce College at a farming event when Madison was about 10. There were paramedics, firefighters, police officers with all their cool vehicles.  I whispered to Madi "hey sugar, climb in that police car, hands behind  your back, look very guilty..." this could be a Kodak moment! She asked if she would get in trouble I said "yea, they'll probably arrest you", so she climbed it. I had that picture in my office for years! People would ask "is that your daughter"  to which I replied "used to be". I'd let them off the hook eventually. When she was about 11 Madison and I met someone for dinner: he had seen the picture and knew the real story. He mentioned to Madison that he had seen the picture in your dads office and asked what she did. Her response, "graffiti". 


She's still a smart alack. Feeling particularly spunky today Madi asked if the scar on her wrist looks weird, "touch it right there dad". I touched it and she screeched as if in pain, then a huge smirk. Faker! We were both rolling with laughter!

She's got me twice now... Payback her way comes.

 

Happy New Year!

1/2/2016

 

So how's Madison?! To recap, Madison had major surgeries in October to repair a hole in her throat, we could see blue titanium. Skin and arteries were harvested from her wrist, and a neurosurgeon, ENTs, and a plastic surgeon opened her neck from Adams apple to her ear, and sewed the tissue to her throat and connected the arteries. Prior to the surgery the doctor asked Madison which wrist are were going to pull tissue from. Dad spoke and pointed saying "that one" (at her mom's wrist... mom would have gladly offered it, Dad and Angela too, but wasn't an option) 

She still can't eat food or drink water, so it's all stomach-tube feeding and 'drinking', about 55 syringes a day. This has been a tough and slow recovery. While the long term outlook for her swallowing looks good, she may require a 'procedure' in January or February.

Madison seemed to have an interest in flying a small airplane, so for Christmas she was given an introductory flight lesson, one of one. The instructor took off, Madison flew above Camarillo and Oxnard, then along the coast returning to the airport. On the drive home Madi asked about skydiving. 

Swell.

Several people asked if she landed the plane. Given it was only about an hour of her flying and she did amazingly well, the instructor landed the plane. Could she have? Confidence was really high that if she tried to land, she could probably hit the airport. 

​Literally.
 
Happy New Year! 

Thank you for your love and support, 
​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.