Bruises — The Data We Don’t See
Clinical records alone hardly capture the impact the illness of a child has on a family. This is how we used music and art to understand and communicate the information that was missing.
In early August 2017, my friend and collaborator Kaki — acclaimed musician, composer and guitar player — woke up her almost three year old daughter, Cooper, in their house in Brooklyn and saw that she had blood in her mouth. She composedly asked her to stick out her tongue, and on it was a lesion the size of a dime.
“Heart racing, panicking on the inside, I calmly packed her up and went straight to her pediatrician, who send us directly to the ER. After a blood test she was diagnosed with a condition called Idiopathic Thrombocytopenic Purpura, or ITP, an auto-immune disease where her body attacks her platelets, a crucial part of blood clotting. She was getting spontaneous bruises and burst blood vessels called petechiae all over her body. The following weeks were a terrifying spree of platelet transfusions, courses of steroids, blood tests, and abject terror as we watched her platelet levels rise and fall.” — reports Kaki.
