Wednesday, December 23, 2015

Wednesday, December 23, 2015

Tonight's picture was taken in December of 2005. We took Mattie to one of his favorite restaurants in Maryland. He loved it because it had an adorable pond near the restaurant's entrance and it was filled with turtles and fish! When Mattie got antsy sitting and eating, we would occasionally walk with him outside the restaurant. This photo was on the cover of our Christmas card in 2005!


Quote of the day: He who has not Christmas in his heart will never find it under a tree.  ~  Roy L. Smith

It is the moment Peter and I have been waiting for!!! After four years of incredible work and effort, Mattie Miracle is proud to announce that the Psychosocial Standards of Care for Children with Cancer and Their Families has been published today in Pediatric Blood & Cancer. We feel this is timed beautifully with the holiday season, as it is our way to truly memorialize Mattie and use our experiences with his battle to meet the psychosocial needs of children and families throughout our Country.

The need and creation for a set of psychosocial Standards were our vision, based on our experiences with Mattie who heroically battled cancer for 14 months. The publication of the Standards in a tier 1 Medical Journal represents an historic event. The four year-long project to develop the Standards involved reviewing two decades worth of research, encompassing over 13,000 articles that were meticulously evaluated and graded for inclusion in the body of evidence to support the recommendations made for each of the Standards.

These Standards bring us one step closer to ensuring that children with cancer and their families will have access to psychosocial care throughout their cancer journey. We are very grateful to our core psychosocial leaders (Dr. Lori Wiener, NCI; Dr. Mary Jo Kupst, Medical College of Wisconsin; Dr. Anne Kazak, Nemours Children's Health System; Dr. Bob Noll, University of Pittsburgh; and Dr. Andrea Patenaude, Dana Farber), the entire team of over 60 contributors of this work, and of course our supporters who helped to fund this historic project.

Pediatric Blood & Cancer, created a supplement edition of their journal to house ONLY the Standards! There are 16 chapters. The first chapter is an overview of the project and Standards and the remaining chapters cover each of the 15 Standards. 

Mattie Miracle funded the entire publication and has paid for open access to the Standards, so that the public could read and access the Standards indefinitely:


http://onlinelibrary.wiley.com/doi/10.1002/pbc.25675/abstract

With the Standards being published today, this meant that we had to spend some time by the computer publicizing the Standards on social media! Peter and I took turns on the computer today, but this afternoon while Peter was working, I went with Peter's parents for a walk around Horn Pond, a 102-acre water body in the next town over.

I snapped a photo of this adorable Christmas tree in the woods. Right next to the tree is a memorial bench in honor of someone's brother who died. So I assume it is the family decorating the tree in honor of their loved one! 

I did not bring my camera with me today, but with my phone, I did capture some photos. We saw all kinds of things on our walk today.... turtles, hooded merganser ducks, mallard ducks, swans, cardinals, a great blue heron, and even a kingfisher. 

One surprise along the way was I even met Rocky, the horse. His owner was riding him through the woods and we had an opportunity to chat and meet Rocky. Rocky apparently isn't a friendly sort and he likes to dominate other horses. Yet Rocky and I seemed to have a rapport. His owner said that no one wanted this horse because he is so difficult to care for, which is why I told him he was the horse whisperer! Which he thought was funny.