Thursday, February 13, 2014

Thursday, February 13, 2014

Tonight's picture was taken on Valentine's day of 2009. My last Valentine's day with Mattie. This photo captures a very special moment between us. Mattie worked that afternoon with his art therapists to create a few hand crafted surprises for me. One was a crown of hearts for my head and the other was a box decorated with hearts and filled with all sorts of art work and messages from Mattie. I still have this box and is stored in one of my closets. 


Quote of the day: The world is so empty if one thinks only of mountains, rivers, and cities; but to know someone here and there who thinks and feels with us, and though distant, is close to us in spirit, this makes the earth for us an inhabited garden. ~ Goethe

Today Mattie Miracle held its second psychosocial Think Tank at the American Psychosocial Oncology Society conference in Tampa, FL. We had twenty people attend this very intense nine hour working session. What brought us to where we are today? Well I felt a bit of history was important for the group to hear this morning. 


Naturally, I shared Mattie's story and aspects of his battle. Though Mattie's physical treatment was horrendous, at the end of the day what remains with us even today are the psychosocial issues. These issues range for each child but for us it was watching Mattie battle with isolation, depression, anxiety, medical post traumatic stress disorder, an inability to walk and be independent, and the list went on! I explained this in context of what motivated us to start a 501c3, one which is focused upon psychosocial education, awareness, and enhancing access to supportive services.

Soon after Mattie died, I began doing searches of the scientific literature using keywords such as 'psychosocial' and 'trauma.' A name that kept popping up on the internet was Dr. Anne Kazak. So in 2010, I emailed Anne and told her how much I appreciated her research and that it resonated with me. Anne immediately wrote me back and it was through her, we built our psychosocial dream team comprised of now five professionals. During 2010, we also began advocating on Capitol Hill, not for medical research but for psychosocial care of children with cancer. With each congressional staffer visit, the question always posed to Peter and I was..... is there evidence based data supporting the need for psychosocial care and interventions? At the time Peter and I did not know, so we reached back out to Anne and decided to do something gutsy, which was to host the first ever psychosocial childhood cancer symposium on Capitol Hill in March of 2012. This was an historic event in which 12 states were represented, over 85 mental health professionals were in attendance, along with congressional staffers and four congressional members. We wanted to show congressional staff that their psychosocial questions could be answered and to do this we assembled a team of leaders in the field who gave a congressional briefing and then workshops for the next eight hours. 

From that symposium, Lori Wiener, who served on the panel of symposium experts, contacted me to encourage me to consider financing and hosting the first ever childhood cancer psychosocial think tank at the American Psychosocial Oncology Society conference in Huntington Beach, CA. That was another historic event which brought together a multi-disciplinary group of psycho-oncology professionals to brain storm standards of care and how to draft them! In one year's time, a group of over 40 professionals have produced an 110 page document backed up by evidence based practices and/or professional consensus.

Today's event was designed to review each of the standards, recommendations, and to discuss next steps. However, what I do want to mention here is that developing a standard of care was Mattie Miracle's brain child. No one else's and this it is something that we feel passionate about in honor and in memory of Mattie. Do I want to help other children and families? ABSOLUTELY! But I am the leader of a Foundation who was also the mom of a child who died from cancer. My motivations will always revolve around Mattie, his legacy, and finding meaning for this terrible tragedy.  

One of our think tank participants, two years in a row, is a psycho-oncology leader from the Netherlands. Today she presented me with this beautiful tulip candle in memory of Mattie and to thank us for the work we are doing. This evening Peter snapped a photo of this candle with the MOON in the background. Very fitting for our Mattie Moon. This candle meant a great deal to me because it not only came from the Netherlands, but Martha remembered Mattie Miracle's color is orange and as she stated today in the meeting.... let's make the miracle happen! Which is to finalize a standard of care. I couldn't have said it better myself.