Wednesday, September 16, 2020

Wednesday, September 16, 2020

Tonight's picture was taken in September of 2006. Mattie was visiting Peter's parents in Boston. Last night's photo and today's photo perplex me because I can't understand what was going on at that time which would have prevented me from traveling as a family. Which is why I asked Peter if he could fill in the gaps.  Like me, he can't remember either. I know in September of 2005, Peter took Mattie to Boston so I could study for my licensure exam. That explains that year, but not September 2006 and 2007! I typically remember everything so well as it relates to Mattie, but clearly not this time period. In any case, while in Boston, you can see that Mattie transformed a big cardboard box into a playhouse! Not unusual for Mattie! He LOVED boxes as they allowed his creativity to run wild. We had many cardboard box creations in our home over the years and Mattie wanted to save them. We held onto them for a while, and then I convinced Mattie that we would photograph them instead of saving them.

Quote of the day: Today's coronavirus update from Johns Hopkins. 

• number of people diagnosed with the virus: 6,620,186
• number of people who died from the virus: 196,465

Sunny got a new toy today! Sunny maybe 9 years old, but he has pep in his step and loves to play. Particularly with Peter. 

Today I had the opportunity to have a zoom call with an undergraduate student at the James Madison University. She reached out to me because of a class assignment. It is a non-profit class, in which she has to identify a non-profit within the community, interview them, and learn more about their mission and work. This student picked Mattie Miracle.

I am always curious to find out how students hear about us. So I asked if she knew someone with childhood cancer, to determine whether the connection is personal. In this particular case she knows no one with childhood cancer, yet she told me her mom is an elementary school teacher, and a child at her mom's school had died. Which I believe made this issue more real for the college student. 

Prior to the call, I shared various pieces of information about the Foundation with the student. I sent her links to articles about us and also forwarded a few videos. I figured all this tangible information would help her write up her report. It is interesting to hear about our Foundation and work through someone else's lens. Especially a person who isn't connected to our topical area or non-profit space. 

The student asked good questions and was genuinely interested in having a dialogue. What I found touching were her comments. She explained that she has done a lot of volunteer work at different non-profits, but none of them have the reach we have achieved. Meaning that we provide direct support to individual children and families with cancer, but we are also changing policy and the way health care is provided to ALL children with cancer. I thought that was a very astute observation. 

We talked about why we started the Foundation, the impact of COVID on the Foundation's operations, our mission, goals, how we assess results of the Foundation's work, sharing stories about patients we have helped, and the challenges and rewards of running a non-profit. All questions I can easily answer as I live and breath the Foundation. But she also asked me if in 2009 (when we started the Foundation) I could have predicted where the Foundation would be today? A thought provoking question! I think what has made the Foundation so successful is we use the lessons we learned from Mattie as our compass. Mattie showed us that childhood cancer is NOT just about the medicine. That psychosocial care had to be part of comprehensive care, and therefore Peter and I worked hard on figuring out how to achieve this goal. It wasn't by happenstance that we connected to the best and brightest psychosocial professionals in the field! These connections were intentional, and when you put committed and dedicated people together, there is no telling what can happen! The Psychosocial Standards of Care and their companion tool kit (Matrix and Guidelines) are the products of such collaboration.