Working with the Medical Team
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
“We were trying to prepare her for becoming her own advocate. You need to be forthright.”
A dad to fellow parents: “Be present, have a voice, trust but validate.”
Message to parents: Trust your intuition. Message to clinicians: Listen to what the child and parents want and do whatever you can to make that happen.
