Thursday, February 25, 2021

Thursday, February 25, 2021

Tonight's picture was taken in March of 2008. This was one of the creations Mattie made in his kindergarten class. What was the impetus of this picture? Well that day I was a guest in Mattie's classroom. I was asked to tell a story about a childhood memory of mine and to also bring in photos and an activity for the children to do after my story. So I told the story of my experience on a transAtlantic cruise with my mom and grandma when I was a child. I even brought photos of me on the ship and memorabilia from the Italian shipping line. After my story, I provided  paper, stickers and all sorts of things travel related to the children. So in Mattie's case he drew a picture of the SS Mattie, which included stickers of luggage and dolphins. 

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

• Number of people diagnosed with the virus: 28,396,896
• Number of people who died from the virus: 507,803

As I was getting ready this morning for a full day of chores and work, I received a text message. It was from the coordinator of child life services at Mattie's hospital. She wanted me to know that she was virtually attending a conference on childhood cancer at MD Anderson in Texas. In today's session this slide came up on her screen. She saw it, snapped a photo, and sent it to me.

Seeing this slide made me smile! I know what I am seeing but you may not! This red book with a sun on it is the Psychosocial Standards of Care, Mattie Miracle's vision. The Standards were published in a top tier medical journal, Pediatric Blood & Cancer, in 2015. On the front cover of the journal is Mattie's "Mr. Sun." In retrospect, I am so glad Mattie's art teacher asked Mattie to sign his work! If there is any doubt who this sun belongs to, just look in the lower right hand corner, and you will see a big MATTIE! 

The professional in the lower right corner of the slide is Dr. Barbara Jones. Barbara is a Professor and Associate Dean for Health Affairs at the University of Texas at Austin. Barbara is a social worker by training and has been an integral part of the team to develop the Psychosocial Standards of Care. We have presented at national conferences together, we published a paper together in 2018, and we testified about the long term consequences of impairment from childhood cancer to the Social Security Administration. 

We feel very honored to be connected to Barbara. She is a force, a captivating speaker, and a very compassionate individual. She is definitely an ambassador of the Standards, as this slide clearly illustrates to me. We maybe living through a Pandemic, but the Psychosocial Standards of Care are alive and well. Discussed nationally and internationally and it is my hope one day they will be implemented in the 200 cancer treatment sites around the country caring for children. No one thought the Psychosocial Standards could be created, must less published. That large scientific task was accomplished and we are determined for the Standards to be operationalized so that children and families have access to optimal psychosocial care throughout the cancer journey.