Tonight's picture was taken on October 7, 2008. I typically did not snap photographs of Mattie upset or in a bad mood. I am not sure why I made that decision! Now that I look back at this, I really should have. But at the time when I was writing the blog, we were fighting for Mattie's life and communicating to hundreds of people every day. The content of what I was writing was hard enough to read, so I suppose subconsciously I did not want that translated into photos. I am not sure if that was to protect others, or to protect Mattie. But Mattie suffered a lot of unhappiness. This photo captured it well. Several of my students put together this huge Halloween basket for Mattie, in hopes that this would bring him some fun and to let him know they were thinking about him. However, what happened was Mattie understood from this that he was different. That he lived in a hospital and didn't get to do what other children were able to do.... such as celebrate Halloween or go to school. All these changes made Mattie very depressed.
Quote of the day: Alone we can do so little; together we can do so much. ~ Helen Keller
Yesterday evening, the Association of Pediatric Hematology/Oncology Nurses (APHON) sent out a press release about their official endorsement of our National Psychosocial Standards of Care for Children with Cancer and Their Families. Mattie Miracle has been working with APHON on this press release, and we were thrilled to see it all over the Internet yesterday and today. We are grateful for APHON's support and for their acknowledgment of this vital work. As a Foundation, we are working on getting as many professional endorsements of the Standards, for credibility purposes. Having major organizations endorse the Standards, will only help with the adoption and implementation phase of this project.
But like Helen Keller's quote pointed out, when a group of people come together... so much can be accomplished. Peter and I may have had the vision to create National Standards of Care, but without the expertise, skills, and steadfast work of our core psychosocial research team and a total of 66 health care professionals from the US, Canada, and the Netherlands these evidence based standards would never have been generated. We are grateful to these committed professionals and for APHON for being our first professional endorser!
Association of Pediatric Hematology/Oncology Nurses Endorses Psychosocial Standards of Care for Children with Cancer and Their Families:
http://www.newswise.com/articles/association-of-pediatric-hematology-oncology-nurses-endorses-psychosocial-standards-of-care-for-children-with-cancer-and-their-families
No comments:
Post a Comment