Daniel was an avid tennis player when he was diagnosed with Osteosarcoma in his left femur in July 2020 at the age of 13. Like all families that have gone through it, our world was turned upside down, and we had to make difficult decisions quickly around treatment and surgical options.
The surgical reconstructive option we chose took us to Memorial Sloan Kettering in NYC (we live in the greater Boston area). The method is called “distraction osteogenesis” where his own bone would be regrown to replace the cancerous section that is removed. This was expected to be a long, grueling process with multiple surgeries, but the outcome of it (if successful) would be one that is ideal for young, active patients like Daniel who want to go back to their active lifestyles without a lot of restrictions. With everyone working and schooling remotely during the Covid pandemic, our family moved to NYC and lived there for a year, while Daniel underwent the 8-month-long MAP chemotherapy and a few surgeries.
A couple of years into the reconstructive procedure we found out that Daniel’s knee cartilage did not survive. After processing this terrible and disappointing news, and carefully weighing the options, Daniel decided to opt for rotationplasty, a form of amputation that uses the ankle as a “knee”. We are hopeful that this will allow Daniel to lead the active lifestyle he wanted from the beginning. The surgery was successfully performed in July 2023, and he is currently recovering and eager to be walking with his prosthesis.
There is much to be done to “make it better” for the Osteosarcoma patients and families from developing better treatment and reconstructive surgical options, supporting the families throughout the journey and to finally developing a cure. MIB Agents has made a huge impact on Daniel, and we are grateful to be part of this world-class organization with such an admirable mission.
FACTOR brings together the leading researchers, clinicians, surgeons, together with patient families and OsteoWarriors to Make It Better for those battling this disease.
Each year a grant of $100,000 is awarded to a project that will focus on moving research forward for osteosarcoma patients.
Browse our extensive list of osteosarcoma resources from MIB Agents and our partner organizations.
OsteoBites is a weekly webinar and podcast where we invite Osteosarcoma Experts and OsteoWarriors to share their research, hope, and innovation.
Agent GAMERS game with their fellow OsteoWarriors and OsteoSiblings.
Ambassador Agents are certified peer visitors who provide hope, understanding, and resources.
OsteoWarriors receive monthly letters of hope and cheer from MIB Agent Writers around the world.
When an OsteoWarrior transitions to hospice care, MIB Agents provides an experience or an item of comfort and entertainment.
The OsteoWarriors HQ (headquarters) brings kids and young adults who have a connection to osteosarcoma together and It. Is. Awesome!
A world with less toxic, more effective treatments and a cure for osteosarcoma.
We are devoted to creating and instilling hope with and for our inclusive and collaborative osteosarcoma community. We do this through mutual trust, transparency and compassion.