Thursday, February 14, 2013Tonight's picture was taken on February 14 of 2009. This was my last Valentine's Day with Mattie. That day Mattie's art therapists (Jenny and Jessie) worked with Mattie to create a host of surprises for me. The first one you can see around my head. The second was a box filled with Valentine's Day cards. All cards Mattie hand created for me. The final gift was a beautiful red pottery vase (which Mattie worked on for a while in clinic -- he used a potter's wheel and glazed it red) filled with tissue paper roses. Needless to say I kept all three items! As Mattie was sharing these items with me, Jenny captured this beautiful photo. It is by far one of my favorite photos of us in the hospital. Why I love it so much is because it captures our special look. Mattie and I would frequently touch noses and stare at each other in the eyes. When I think of Valentine's Day now, my mind immediately flashes to this photo!
Quote of the day: What is uttered from the heart alone, will win the hearts of others to your own. ~ Johann Wolfgang von Goethe
Our five hour psychosocial childhood cancer think tank was very successful today. We had a room full of 25 professionals representing the fields of psychiatry, psychology, social work, nursing, and mental health counseling. In addition to Peter and I, there was another professional present who is also a parent advocate. I appreciated her comments VERY much. This was an international group with a leading clinician from Holland and another from Canada, not to mention others from all regions of the United States. Each participant not only represented a major cancer institution but they are also connected to a cancer organization. Organizations which would be key in the acceptance and endorsement of a pediatric psychosocial standard of care. Our five hour agenda looked like this...............................................
9:00 Welcome
Vicki and Peter Brown and Jimmie Holland ("Mother of Psycho-Oncology, Memorial Sloan-Kettering, NY)
9:10 Introductions
9:30 Lessons
from the adult psychosocial oncology community - Paul Jacobsen (Moffitt Cancer Center, FL)
10:00 Principles
and considerations for the development of standards - Andrea Patenaude (Dana-Farber Cancer Center, MA)
10:15 Review
of existing standards (NCCN, CAPO) and existing guidelines - Andrea Patenaude, Lori Wiener (National Cancer Institute, Bethesda, MD), Wendy
Pelletier (Alberta Children's Hospital, Canada), Martha Grootenhuis (Emma Children's Hospital, Amsterdam)
10:45 Break into Groups. Main
Overarching Question: What is truly “essential”
12:00 Break
12:15 Working
Lunch. Groups present (Consensus Based Approach) - Paul Jacobsen, Anne Kazak (Nemours Children's Health System, DE)
1:15 Next
Steps - Bob Noll (Children's Oncology Group)
1:45 Closing
Comments - Vicki and Peter Brown
2:00 Adjourn
This photo was taken later in the day after our small group working session. I was fortunate to have my friend and colleague Denise with me. Denise and I were in the same working group and I appreciated her insights and observations on the day. Denise is also a supporter of ours and I am so glad she wanted to attend with us because I really value our supporters. So much so, that at the end of the event, I reminded participants where the money came from to host this event. I told them that I am a mental health counselor by training, NOT a fundraiser. But that I am learning quickly!!! All the funds generated for this event came from hundreds of people within our Mattie community who support us, our mission, and who have confidence and faith in what we are trying to achieve. Though all our supporters weren't in the room with us today, they were with us in spirit. I am always humbled because without our community funds, we couldn't accomplish MUCH!
Peter and I received excellent feedback today. One of the psycho-oncologists acknowledged Mattie Miracle in her PowerPoint slide as the impetus for the notion of establishing a Standard of Care. Our March 2012 Symposium, caused a chain reaction. Now other cancer groups are talking about the importance of establishing a Standard of Care. Naturally since this is our baby, I could take offense over the fact that others want to claim this now, but I really do not. Our goal is to get this Standard established and as long as we are sitting at the table helping this goal come to fruition, I am happy and willing to work with all interested parties. Several people came up to me today to let me know how impressed they were that we were able to convene all these minds together in one room, and not only were they all together, but they really worked and were motivated to accomplish something today. In addition to that achievement, many of these professionals have signed on to remain working on the project with the goal of convening at another meeting in a year. A meeting which we will consider funding and hopefully will have some sort of written product as a result.
Another insight I had was that parent participation is crucial in this process. Though these individuals are very skilled and work in this arena, they haven't LIVED our experience. Peter and I honestly have a lot to contribute to the discussions and as I always say, Mattie was my BEST TEACHER. Within the think tank, I also planned a beautiful luncheon buffet. I drove the hotel crazy with this buffet, because their pairing of foods made no sense to me. So basically they worked with me to design a buffet I would be happy with, and they succeeded. Got lots of food compliments today!
After the think tank was over, we met up with our friend Dave and we carted over all our items to the exhibit hall to set up our Mattie Miracle booth. Dave will be manning our booth for most of the conference, so it was important he understood our vision for the area. Peter snapped this photo of the listing of some of the exhibitors. 
While we were setting up our booth, we met Michelle. Michelle sits in the booth adjacent to us. She came over because she admired our booth and wanted to learn more about us. She too is a cancer survivor, and when I told her about Mattie, she was captivated by our story. She read through our brochure, looked at our pictures, and wanted to hear more about us. In addition, she wanted information on how to make a donation to the Foundation. I told her she made my day, since in all reality we NEVER did a conference exhibit booth before. Goodness knows I attended enough conferences in my lifetime, but schlepping the materials and setting one up is another story. You can see the retractable banner behind us and our new tablecloth which we purchased for the Foundation!
Our booth features t-shirts, drawstring bags, pens, brochures, informational placards, photos, a sign up sheet for our e-newsletter, business cards, and of course CHOCOLATE!!!We are hosting a dinner tonight with our key psycho-oncology players, so I am signing off. I am exhausted since neither one of us slept well last night. However, before I sign off, I want to wish all our readers a Happy Valentine's Day. You have to know I love all of you for your support, for reading my thoughts and feelings each day, and for all your lovely feedback. It is through your reading of the blog that you help keep Mattie's memory alive, which means a great deal to me.
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