Two Years Ago This Week

The two year anniversary... June 2014 was the last cancer related surgery. A shout-out and our heartfelt appreciation to:

• JOSH SOMMER and the Chordoma Foundation, dedicated to improving the lives of patients by accelerating the development of new treatments while helping patients find the best care possible with treatments that are available today. A very brief and worthwhile video at this LINK. Honorable mention to Shannon Lozinsky, the CF's Patient Navigator for her excellence and guideline, and to the incredible team at the CF, link HERE
• RNs AL FERREIRA, ANNE FIORE, CHRISTINE SABA at MGH for their patience, expertise, and guidance
• Doctors HORNICEK, SCHWAB, DELANEY, CETRULO, MULLEN, CHOY and ROCCO at the Stephan L. Harris Center for Chordoma Care at MGH for their unbridled passion, globally recognized expertise and leadership primarily treating chordoma patients
• RNs JESSE in Lundar-9 and CAITLAN in PIC unit, providing world class care.
• TESSA, Madison’s ENT physical therapist. A drill-Sargent... nuff said. (Loved her too, truly!)
• CHRISTINE, RON, and CALLEY for their expertise and care in the Francis Burr Proton Center
• Dr. SUSAN STORCH at Kaiser Woodland Hills for her unbridled passion, experience, excellence, and collaboration with MGH, as well as her outstanding staff on the 4th floor.
• RNs REGINA, CAROL, CESAR, KELLY at Kaiser Woodland Hills on the 3rd floor
• Dr. BRARA,  his excellence, and his team for Kaisers collaboration with MGH.
• Dr. LIN, her excellence, to Jo and the other awesome ICU nurses for their outstanding care at Kaiser Sunset

Important disclaimer: Chordoma is an extremely rare disease, each case is truly unique, there is no one-stop-shopping or cookie-cutter approach. Mentioning individuals and teams above expresses our heartfelt appreciation to our cores, but is not an endorsement for any general treatment approach or expert. Given the complexity of Madi's case, prior treatment,  variation type, size, location and entanglement of her tumor, it was what we felt was best for her unique case. 

And sincere thanks for making the following possible: five trips in 2014 to Boston, 14 weeks apartment/hotel rentals, above and beyond Christopher's Haven and Hope Lodge in Boston. We jumped, and you were our safety net.

• AstraZeneca Hope Lodge for providing housing and truly unforgettable experiences. Everybody there was going through cancer treatment, everybody was away from home, so all had an common bond...
• DAN OLSEN, WILL, JOYCE, and CATIE at Christopher’s Haven providing homes for kids with cancer, when cancer hits home.
• JIM FOSTER and his team at Charles River Labs in Boston for creating truly unforgettable memories for the Jones family while we were in Boston
• Girl Scout Troops 60232 and 60100 for their cookie drives and mega garage sale donations, a picture HERE
• Draughts, XHALE, Pizza&More, and Rancho St. Francis (Hogan Family Foundation) for hosting fundraising events
• LMFTs TRICIA LETHCOE and PHIL DIPALOA, and our cancer groups themselves at Cancer Support Community: They armed us with the emotional tools to help conqueror this beast... a "Survivor Story" featuring Madison at this LINK
• NINA WEXELMAN, cancer survivor and LMFT: Nina is the primary peer guide who has helped Madison throughout this 'journey'
• The online CHORDOMA group (a private online village with 1,800 members in 75 countries. *If people or family members are impacted by chordoma, they may email help@chordomasupport.org briefly outlining the request to join).
• Mom and Dads employers, thank you for your flexibility and the opportunity to work remotely as needed
• And last but not least… Family and friends for their prayers, absolute faith, financial and spiritual support, and unbridled LOVE.

We think often and very fondly how each of you has forever touched our lives.

Sincerely,
The Jones Family

Psssst... hey chordoma ... take THAT!