Jani Torrence: How rare is Diffuse Intrinsic Pontine Glioma?
Jani Torrence shared on LinkedIn:
“How rare is Diffuse Intrinsic Pontine Glioma (or the broader term Diffuse Midline Glioma)? We learned today death certificates in Missouri are filed electronically. The hospice dr that filed Nora’s death certificate did not have an electronic option for the word ‘Diffuse’ … a medical term, her cause of death – and not an ‘option’. She did not pass from ‘Respiratory Failure’ as her primary cause of death and what it currently reads. We’ll fight it so her story is accurate. Fortunately, a DMG momma with her baby in Heaven brought to our attention and the amazing hospice team that guided us to the finish line agrees. But, now we get to file paperwork and hope others agree as well.
Nora Kay Bunn is no longer here one year to the day of diagnosis because of an understudied, underfunded pediatric brain tumor that spreads like glitter amongst brain cells therefore making it inoperable … or diffuse.
Brain cancer is the leading cause of death amongst youth diagnosed with cancer and yet the word diffuse isn’t an option.
There’s much work to be done. For now, take note and talk about our girl with colleagues, in your company meetings, amongst family. Share her story and tell people – brain cancer is not rare.
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