Tonight's picture was taken in October of 2008. Mattie was sitting next to Debbie, his art teacher from school. Debbie and Mattie always got along splendidly! She understood Mattie. I will never forget the commentary she wrote to us about Mattie half way into his first semester. Debbie basically described Mattie as an "old soul." She said other things, but the old soul comment caught my attention, because to me that is a high compliment. Mattie loved art and as you can see as Debbie was teaching, Mattie was listening and creating. He produced many beautiful things in kindergarten with Debbie, but he also produced Mr. Sun, the huge painting in our dining room. Mr. Sun was created when Mattie was battling cancer. It is a stunning painting and it was from that painting that we created the Mattie Miracle sun logo.
Quote of the day: The next time you want to withhold your help, or your love, or your support for another for whatever the reason, ask yourself a simple question: do the reasons you want to withhold it reflect more on them or on you? And which reasons do you want defining you forevermore? ~ Dan Pearce
The highlight of our day was finding out that two more organizations have endorsed our National Psychosocial Standards of Care for Children with Cancer and Their Families. The first is the American Psychosocial Oncology Society (APOS) and the second is the Society of Pediatric Psychologists (SPP, Division 54 of the American Psychological Association).
APOS has been instrumental in the development of the Standards, since Mattie Miracle funded two think tanks at their national conferences. It was within these think tanks that health care professionals from around the Country, Canada, and the Netherlands got together to launch the three year long Standards research project. A project which resulted in the creation of 15 evidence based Standards that will be published in a supplemental edition of Pediatric Blood & Cancer (a top tier, peer reviewed medical journal) next month.
Therefore, I am proud to say that the Standards are endorsed by the following three major organizations (and more are on their way!):
1) Association of Pediatric Hematology/Oncology Nurses
2) American Psychosocial Oncology Society
3) Society of Pediatric Psychology
This may not sound tremendous, but in all reality this is an historic occasion. It all began in March of 2012, when Peter and I went out on a limb and decided to host a symposium at the Capitol Hill Visitors Center to address the importance of psychosocial care by discussing cutting edge psychosocial research and hearing from parents of survivors and parents whose children lost their battle. It was at this event that we expressed our vision to have a psychosocial standard of care developed. We did not know what that standard would look like, but we felt it was vital that every child and family member have access to a minimum level of psychosocial support no matter where they were treated in the Country.
At that symposium we had key mental health researchers and clinicians serve on the scientific panel. These leaders shared our vision and after the event was over one of the leaders (Dr. Lori Wiener) reached out to me to have us consider sponsoring a think tank at the APOS national conference. A think tank that would convene health care professionals together from multiple disciplines to brainstorm this huge task and goal.
Lori, along with our other core leaders (Mary Jo Kupst, Anne Kazak, Bob Noll, and Andrea Patenaude) assembled a team of over 60 professionals to work on the development of Standards. This was a three year long project, and what you need to understand is that... NO ONE WAS COMPENSATED for their work! Imagine asking over 60 people anywhere to work together, do tedious work, writing, evaluating, monthly phone calls, and so forth! This is unheard of! When you think of this, it really is quite a feat and worthy of an article! But it speaks to the commitment of this team and their passion and love for their profession and the individuals they serve (children with cancer and their families). These professionals share our vision, that psychosocial care is just as important as the medicine and it must be included in effective comprehensive cancer care.
Psychosocial care is not an adjunct service or simply a nice to have. It is vital for the effectiveness of the medical treatment. It is well known that psychosocial care mitigates symptoms, pain, and enhances adherence to medical treatment. In addition, psychosocial care improves the quality of life for children and their families. The medical treatment for cancer has consequences for patients, and unfortunately the psychosocial issues do not end when the treatment does.
The development of the Standards was a huge undertaking, as the standards are the result of the largest and most comprehensive psychosocial review of the literature to date. Seeing these Standards being endorsed by major professional organizations brings great happiness to all of us involved in this project, because what this signifies is not only the importance of their development, but the acknowledgment that they were developed systematically, following a rigorous scientific process.
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