Theme: Communicating about the Diagnosis

“As a parent, I definitely wanted some action items. I was not okay with go home, and we will follow up with you later. There was zero sense of urgency. As Jackson’s mom that was not okay.” Jackson’s mom describes her quest to get as much info as possible, including about experimental treatments, and her displeasure that insurance and her child’s pediatrician were gatekeepers to some of this. There was some tension with the pediatrician. “I asked him if he thought that I was being unrealistic. I said you understand I know that there is not a cure. You understand that I am not putting him through anything that is unnecessary or painful. But knowing all the options helps me contribute to his quality of life.”