Tonight's picture was taken in May of 2009. Only four month before Mattie died. Mattie LOVED Legos. The year that Mattie battled cancer, he assembled every Lego kit on the market. One of which was this car carrier, which included cars to tow. Mattie loved car carriers from an early age. Whenever he would see one on the road, he perked up with enthusiasm. Now whenever I see a car carrier, it reminds me of Mattie.
Quote of the day: The world is not ready for some people when they show up, but that shouldn't stop anyone. ~ Ashly Lorenzana
I think tonight's quote is great. Sometimes I feel it applies to Mattie Miracle and our psychosocial mission. For the past year or so, the Foundation has been working on getting endorsements of the psychosocial standards from healthcare organizations. We are up to 14 major endorsements and in all reality, the standards sell themselves. They are rigorous, comprehensive, and truly historic.
Most organizations are eager to sign on, and some have just contacted us directly without being asked for a endorsement. However, one organization that we solicited refuses to endorse the standards. I am not going into detail about this here, other than it is political and this particular profession has issues within itself. It is fractured and how care is provided to childhood cancer patients varies greatly depending upon whether this professional group works in a hospital versus works in the community. In any case, this group decided not to endorse the standards because they felt the standards did not incorporate their professionals who work in the community. Meaning what role does this community based practitioner play in the treatment of a child with cancer? The answer in reality is NO ROLE. There is no connection to that community based provider once the child starts treatment. But this is a reality this professional group doesn't want to hear. The issue in my opinion needs to be resolved within their profession, and I really felt if they endorsed the Standards that this would help bridge the gap between hospital and community providers. But instead of facing the reality of their professional disconnect, they chose to take the stance that the standards weren't inclusive and applicable to them.
I am proud to report that the Psychosocial Standards were just endorsed by the American Society of Pediatric Hematology/Oncology (ASPHO). Founded in 1981, ASPHO currently has 2,000 members. ASPHO is the only professional organization dedicated solely to the professional development and interest of subspecialists in pediatric hematology/oncology.
Read the press release on this endorsement:
http://www.digitaljournal.com/pr/3305349#.WO9bS16rQMA
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