Monthly Archives: August 2017

The day life stood still…and then began again

On June 4, 2013, life as my family knew it changed in an instant. Ashley, my oldest daughter, was diagnosed with a brain bleed and a primary, inoperable brain tumor on her thalamus. Since Ashley has high functioning autism, decisions regarding her care fell in my lap. At the time, I worked as a Critical Care nurse pracitioner, a hospitalist nurse practitioner and an ER nurse practitioner… you read that right, I was a workaholic. And as anyone in the healthcare field knows, we tend to have control issues and like to “fix” things. And now I was facing something that I had no clue how to fix!

I spent the next two weeks, sleeping in a chair at Ashley’s bedside in ICU. I had an advantage over many families whose loved ones are in ICU… her doctors were my bosses whom I trusted completely and her nurses were colleagues whom I interacted with on a daily basis. I knew what the beeping monitors meant. If I had a question for her doctor, I just sent him a text. And Ashley, being Ashley, continued to be her upbeat, not afraid of anything, God loving self. My time there could be spent determining what to do next.

During my time in that chair, I scoured Dr Google, for anything I could find on her condition. I walked the hospital halls at night and discussed her case with the night shift hospitalist, searching for an answer….is this tumor deep in her brain cancer? and if so, what next?

During that search for possible answers, I kept coming across research regarding the effect of diet on inflammation in the body and that inflammation causes cancer as well as chronic disease. I found conflicting information on which diet was best… one recommended organic fruit and vegetables (which Ashley hated), Another included flaxseed oil and cottage cheese – another option I knew I would not be able to get her to ingest! Eventually I stumbled across the book Radical Remission by Kelly Turner, PhD. During her research for her PhD, Dr Kelly interviewed survivors that were the outliers, those who beat the odds. They all seemed to have a few things in common… they had taken personal control of their health, they made significant dietary and environmental changes and they had the attitude and the faith that they could beat the odds! Maybe I was on the right track. If we couldn’t biopsy this thing… which we named Fred because better to make it a friend than a foe…then we might as well treat it like it was cancer so there would be no surprises!

I kept going back to the subject of food and inflammation. I stumbled across the Paleo diet and how many people had helped their autoimmune conditions with the diet because it was thought to reduce inflammation – there was that word again. Most of the allowed foods on the diet were things Ashley might eat so it seemed like a good choice. So after approximately 2 weeks, we went home with our girl and the uncertain diagnosis of “we are not sure what it is… we think it’s been there since birth… we don’t think it’s cancerous… come see us in six months.” (that was from the neurology team, not my docs… who both suggested I get a second opinion to ease my mind).

Over the next couple of months, I cleaned out my pantry. Spent a fortune on anything I found that might be considered Paleo – talk about redirecting your stress!… and made an appointment with neurosurgery at Mayo Clinic in Rochester, MN…. and all the while I thought life couldn’t get much worse….but boy was I wrong!

Next….Our extended stay at Mayo Clinic, better known as “this sure didn’t go as planned!”