Tonight's picture was taken in April of 2008, during Mattie's sixth birthday party! Mattie wanted a bowling party, so that was what we planned.... using a Scooby Doo theme of course! Mattie LOVED Scooby Doo and we invited his entire kindergarten class and some close friends from preschool. So it was a FULL event!!! However, as the party kept going, Mattie looked tired and worn down. Right after the party Mattie took the the couch with a raging fever. You may notice the Scooby Doo mystery machine on the cake. This little toy car can still be found in Mattie's bedroom, it was one popular item and remembrance from that party.
Quote of the day: There’s nothing greater in the world than when somebody on the team does something good, and everybody gathers around to pat him on the back. ~ Billy Martin
Today we received the photo below from Lori, a co-director of the Behavioral Health Core and head of the Psychosocial Support and Research Program at NIH. Lori has been working closely with us since 2012. Mattie Miracle may have had the vision for the Psychosocial Standards of Care, but it is Lori who assembled a team of over 80 health care professionals (from around the Country, Canada, and the Netherlands) to develop these evidence based Standards. I assure you that may sound easy, but it wasn't! It required the right type of skill set and leadership of which Lori has both. Creating the Standards was a three year endeavor, but the outcome was that the team produced the first publication of its kind in the psychosocial field for childhood cancer. A publication Mattie Miracle fully funded and has paid for indefinite open access, so the public can read the entire publication at any time.
Lori is the second person from the right, in the front row. This group of 12 social workers formed a focus group at the 42nd conference of the Association of Pediatric Oncology Social Workers (APOSW) in Austin, TX. Mattie Miracle funded this focus group luncheon in order to get feedback from pediatric oncology social workers regarding a checklist we have been working developing. The Standards themselves are hundreds of pages long. Too long to be truly useful from a practical standpoint. Which is why we are working with Lori and others to develop a guide on how each Standard can be implemented at a treatment site and then a checklist to help the clinician/program determine how well the Standard is being met.
The purpose of the focus group was to have clinicians evaluate the checklist to see if it was clear and most importantly usable. I look forward to hearing the feedback, but I heard there was a lot of energy at the luncheon. People were familiar with the Standards and are very anxious for something tangible to use to take back to their practice. Given our schedules, it wasn't feasible for Peter and I to go to this conference, but as always Mattie Miracle is happy to be involved and fund anything that will help implement the Standards.
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