Jerris
Father of Faith. Faith had Osteosarcoma with multiple complications.
Osteosarcoma in an adolescent and ‘Total Pain’: There were all these compounding issues
The father of a young woman who was diagnosed with Osteosarcoma at age 5 and died at age 18 from complications from years of treatment, speaks honestly about the ways the treatments’ side effects impacted her sense of identity and how too many clinicians dismissed the physical and spiritual pain she was experiencing. Her palliative care doctor speaks of the obligation providers have to listen even when they can’t explain what’s going on.
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Osteosarcoma in an adolescent and ‘Total Pain’: There were all these compounding issues
“Once you established trust with Faith, and respected her, she would do anything for you.”
“We had a pinky promise that I would always be very honest with her. I sat on the bed and told her that she was dying.”
The role that a dad can play in advocacy: “We have to create an avenue for dads.”
“We were trying to prepare her for becoming her own advocate. You need to be forthright.”
A palliative care MD: “We need to try to understand what the parent's motivation is; and not shy away from pain.”
A dad to fellow parents: “Be present, have a voice, trust but validate.”
“It was a journey of contradictions.” Regrets and no regrets.