Day 376

Day 376

I woke up feeling grateful. Tired, but grateful. I was glad to have the weight of The Letter off my chest, and glad to begin my day on the Ringling Bridge with my friend.

With the boys safely at school and Michael at work, I began crossing items off of my long “cancer management” to-do list, items that The Letter delayed for longer than I expected. I attended a webinar on Integrative Cancer Management.  I learned a little more about beta glucans, seaweed, krill oil, a select group of mushrooms, vitamin D, and certain probiotic strains. I developed a list of supplement questions for our oncology team, something I haven’t done in several visits. I made follow up appointments for this year and next year with cardiology and genetics. I continued refining our meal plan and created a new Pinterest board to save the recipes I need. And, since it’s Tuesday–Methotrexate day–I mixed up a new batch of kidney detoxifying bath salts and got a castor oil pack ready for Benjamin when he came home.

Organizing all of the things we do to help support Benjamin’s treatment while detoxifying his body feels extremely empowering. I am opening myself up to the possibility that I will find a way to present this information to other mothers with newly diagnosed children. Something palatable, warm, comforting, evidence based, personal and useful. Something I desperately wanted to get my hands on last New Year’s Eve. Something I never quite found.

After business hours tonight, I received a response to my letter from the Patient Safety Officer at All Children’s, requesting a follow-up phone call and meeting. This is all we wanted in the first place. A chance to be heard, and a plan for action.

“Our lives begin to end the day we become silent about things that matter.” -Dr. Martin Luther King, Jr.

3 thoughts on “Day 376

  1. Is this Patient Safety Officer of a rank who can make the kind of changes I am guessing you seek? That title doesn’t sound like it.

  2. I remember getting a phone call from the hospital after I left a voicemail with a person that I thought I was supposed to reach out to if my particular situation came up. Instead I felt put on the spot, backed into a corner and made to question why I spoke up in the first place. Is it possible to make that follow-up “call” an in person meeting?

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