Monday, May 1, 2017

Monday, May 1, 2017

Tonight's picture was taken in June of 2009. We were at my friend Christine's backyard, and she hosted a birthday party for Mattie. Mattie's birthday was in April and he celebrated his 7th birthday in the hospital. When he home between treatments, Christine had a party with many of Mattie's friends. She had the company Reptiles Alive come to celebrate Mattie's birthday and they brought a boat load of creepy and crawling things with them. Right up Mattie's alley. As you can see he wasn't at all afraid of this snake. Unlike myself, who was on the opposite side, but zoomed in with my camera lens to take this photo! 


Quote of the day: Let me tell you the secret that has led me to my goals: my strength lies solely in my tenacity. ~ Louis Pasteur

I honestly don't know what is happening to our Nation's Capital. Over the course of the last 5 years, I have seen an enormous decline and to me it starts with graffiti. I CAN'T stand it. To me it is about the ugliest thing I have ever seen. I addressed these same three areas with the Department of Power and Works last spring. They actually cleaned it but as soon as things get cleaned, the vandalism happens weeks later. As a private citizen I would love to go out and clean it myself, but if I should I would be the one arrested. Today, I reported this once again, because I can't tolerate this. It upsets my mind and it detracts from our community. Perhaps society as a whole! Mind you this nonsense is right outside the State Department. Who does NOTHING about it! 

The next horror show is by the Kennedy Center. I would love to have a private surveillance camera capture these people who spread this garbage around on our walls. I imagine in some Countries like Singapore, such filth wouldn't be tolerated and there would be consequences. 

The third area is the wall behind the metal fence you see above the green signs. Sunny and I walk passed here every day, and I can't tolerate it. I spent thirty minutes inputting my requests on the DC graffiti removal website today because I reached my maximum. 


It was a busy day of work. The executive director of Momcology, a national organization comprised of parent advocates contacted me today and we had a lengthy and significant conversation. Momcology has 6,000 members and 150 new families join their support network weekly. 

Momcology was formed to help bridge the gap of loneliness any parent feels once their child is diagnosed with cancer. They offer on-line support groups and now are running evidence based groups at select hospitals. The executive director found out about Mattie Miracle and the standards from attending a conference and was told to reach out to us. Momcology wants to endorse the standards and I am happy that they also want to do some assessments of families to see if they are aware of the standards and better yet find out whether they received standard psychosocial care during the treatment process. Our hunch is that what families report and health care providers report are like night and day. Mattie Miracle has been looking for a meaningful way to access and assess families and partnering with Momcology will be a win win for both of us. In many ways it is humbling that organizations view Mattie Miracle as the advocacy leader of psychosocial care for children with cancer and their families. 



Meanwhile later today, the chaos only grew in Mattie's room as I was making placards for each of our raffle baskets. I have done this eight years in a row, so in many ways I have this down to a science. Nonetheless it takes time and effort. But the goal is to make things as enticing as possible in order to inspire Walk attendees to purchase raffle tickets.