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Treatment Roadmap 

11/22/2013

 
Madison, Chris, and Colleen traveled to Boston and met with Mass General Hospitals (MGH) multidisciplinary team of chordoma experts: Dr. Francis Hornicek director of the center, Dr. Thomas DeLaney the director of proton radiation therapy, Dr. Edwin Choy medical oncologist and principal investigator for clinical trials, along with nurse coordinator Al Ferreira RN, and nurse practitioner Anne Fiore. This is the A-Team... individually and as a team, awesome! 

While I.V. based chemo seemed unlikely, the tumor board and medical team determined that based upon the limited data available given the especially rare type of the already rare one in a million chordoma cancer, the best odds to prevent a recurrence and reduce surgical complexities includes I.V. (vs. pill form) chemo as part of their recommendation. Dr. Choy's role is 70% research and 30% practice. He explained that from a clinical research perspective he could put Madi on a pill regiment that would further his research, but there is no data to support that any of the emerging chemo drugs would reduce the tumor size or simplify surgery. He's recommendation is to treat her aggressively with traditional chemo.
 

The 2014 plan in brief:
  • 3 months chemo  
  • 2 weeks rest and recuperation at home  
  • 2 days at MGH setting up proton radiation molds  
  • 2 weeks at home awaiting the 'go' 
  • 5 weeks proton therapy in Boston  
  • 3 weeks rest and recuperation at home  
  • 3 weeks in Boston. Surgery and rehab  
  • 4 weeks rest and recuperation at home  
  • 1 week chemo and 3 weeks proton therapy in Boston 
  • 2 months chemo at home 
The sum of it all... a lot to process. Dr. Choy added that we probably don't want to be back in Boston in 8-10 years because of a recurrence wishing we'd been more aggressive early on... chordoma recurrences are worse. 

All that said, off to the
Hope Lodge on Friday 11/15 for a tour. It's an amazing facility in Boston that has 40 individual mini-suites. There are four large communal kitchens, a very large dining room, public living rooms, a library, an exercise/yoga room, and a small movie theater. The Hope Lodge is sponsored by Astrazeneca for people staying in Boston for outpatient treatment. This would offer Madison the opportunity to be around peers while having some privacy, with her folks working remotely in a nearby hotel.  

A heartfelt thank you to everyone your support and prayers. The experts at MGH are awesome and Hope Lodge is amazing. We hold our heads up with your love, support, faith and determination understanding this will be a fight, and knowing who will win...

Team Madison  

 

A verbal agreement does not a contract make... yet!

11/6/2013

 
While one of the specialists with the Jones' healthcare provider indicated the organization will be referring out, appearances are such that each medical discipline within the organization must refer out. 

Radio Oncology has agreed to refer out Proton Radiation and the paperwork is being processed, a happy thing. 

Monday 11/4/13 appointment with Medical Oncology: They're awaiting Mass General's written recommendation to determine whether chemo is necessary. If so, would it be referred out or administered locally. On that, it will -not- likely be IV chemo, but pill form... another happy thing.  

Neurosurgery would have to refer out as well. If they can't perform what the specialists can, and if it's an acceptable medical procedure that has data to support specialized treatment. Neurosurgery is awaiting a written treatment road map from Mass as well. That said...

Madi has a consultation with Mass General in Boston on Nov 14, 2013. Mom, Dad, and Madi will be meeting with the chordoma experts to learn the specific treatment recommendations and associated timelines. Stay tuned!



Ellen Degeneres show - Nov 5, 2013

11/5/2013

 
Picture
Madi and Angela were in the audience of the Ellen show, along with Angela's friends Carmen and Lisa. What a treat! Guests were Ashton Kutcher and Sting. 

While a redneck photo (a pic of TV), you can clearly see Madison and Angela... 

Yes... the episode is still parked on the DVR. 




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