Thursday, April 14, 2016

Thursday, April 14, 2016

Tonight's picture was taken in April of 2009. This was clearly Mattie's potato chip phase! Mattie had a few eating phases. Because chemotherapy truly impacted Mattie's appetite and also his ability to eat. His chemo left him with mouth and throat sores! So with that, it was hard and painful to swallow. We had the McDonald's chicken tender phase, the vanilla shake phase, the vanilla frosted donut phase, and the Utz potato chip phase. Mind you it couldn't be just any potato chip! It had to be the Utz brand. I will never forget while at the hospital one night, Peter went to EVERY vending machine to find Utz potato chips. He knew he couldn't come back to Mattie's room without them! Literally something that may sound trivial could lead to an amazing roller coaster of emotions for Mattie. 


Quote of the day: Nothing exalts the soul or gives it a sheer sense of buoyancy and victory so much as being used to change the lives of other people. ~ E. Stanley Jones

We flew to Boston today, rented a car and then drove an hour to Providence, Rhode Island. Peter and I are presenting at the American Pediatric Oncology Social Workers conference tomorrow morning. 

This was the photo we took coming into Boston!

When we left Washington, DC it was in the 60s and glorious sun (for a change). Landing in Boston, we were greeted with 48 degrees and nothing blooming. It is hard to believe that a couple of hundred miles could make such a huge difference in climate. 

Can you see the cranberry bogs? It was amazing that we could see these red berries from the sky. 

This is one of my favorite sites coming into Boston... Boston Light! Can you see the white lighthouse in the middle of Boston Harbor?

As we were driving to Rhode Island, I can't tell you how many Dunkin Donuts we passed. It is as common as seeing a bank! We passed the Dunkin Donuts Center along the highway and I was joking with Peter that even this complex is named after the donut company. Peter did not believe me at first. He thought it was just an advertisement. But NO! Apparently it is the "epicenter" of entertainment in Providence!


It is funny, tomorrow morning we are doing a 90 minute presentation to about 200 social workers. The presentation will introduce them to Mattie, the Foundation, the Standards project and the Standards themselves. Clearly there is a great deal of scientific content to this presentation. Yet the part that worries me the most about the presentation is the beginning. The part that I am doing about "who is Mattie" and in essence why we have chosen as a Foundation to focus on psychosocial care. I am not sure why this troubles me. It does at every conference presentation we do. One would think I should be worried about the content and the substance of our presentation, but that isn't what weighs on my mind. What weighs on my mind is how to convey Mattie to a group of strangers within minutes. How to get them to understand that our experiences led us to where we are today, and to the vision to create standards of care. I always tie myself up into knots because I know the only way Mattie will be acknowledged, appreciated and understood by others now is through my own words and my role as an advocate. So to me that is a far more daunting charge than just presenting content.