Saturday, March 10, 2018

Saturday, March 10, 2018

Tonight's picture was taken in April of 2009. This was a typical scene in Mattie's hospital room..... filled with people. But not just any people. Two were child life specialists and the other was a hospital pediatric volunteer. There may have been a bed sheet down on the floor for Mattie to sit on, but as  you can see he moved it aside and preferred the floor. When caring for Mattie, I had to balance his need to play and be a child, with his ability to easily get sick from germs that could be picked up easily from other people and the environment. In most cases, I opted for letting Mattie be a child. 



Quote of the day: The single biggest problem in communication is the illusion that it has taken place. ~ George Bernard Shaw

Our Saturday morning began before 5am. A continuous sound outside our window woke both of us up. When Peter went to look outside our window, he could see that tables were being set up on the highway for a race. The DC Rock and Roll Marathon. Just what we need.... another marathon and more road closures. Of all days, we really did not need this today. As we had a strategy meeting scheduled with several psychosocial researchers in Arlington, VA. 

I thought getting out of DC this morning would have been bad and that getting into Virginia would be a breeze! WRONG! Getting out of DC was easy despite the marathon. However, as soon as we crossed the Potomac river into Virginia, we could see roads blocked everywhere. Apparently there was the Four Courts Marathon in Arlington, VA. Which blocked the street where Peter's office is located! 


Despite all the traffic and road closures, we were able to meet and have a very productive meeting. There were five of us in this conference room and two others called in to participate. As one psycho-oncologist is from Canada and the other is from Boston. 

The purpose of today's meeting was to continue working on a checklist that will help psychosocial professionals all over the country tangibly determine whether they are meeting the 15 psychosocial standards of care that were published in December of 2015. The Standards were Mattie Miracle's vision, which was to create evidence based standards of care that would enable all children with cancer and their families to have access to optimal psychosocial care throughout the treatment process. The publication is several hundred pages long and most clinicians are not going to have the time or patience to read such a document. Which is why creating a chart that outlines each Standard and gives clinicians an opportunity to rate (on a scale of 1-5) how well their site is meeting each Standard will significantly help with implementation. 

I have to say after a week like this, I am exhausted. I managed sitting on a dissertation defense, hosting a 19 person volunteer dinner for the Foundation, undergoing a medical test, running a licensure board meeting yesterday, and planning today's strategy session and lunch. These are just some of the big ticket items from the week!