Friday, February 14, 2014

Friday, February 14, 2014

Tonight's picture was taken on February 14 of 2009. This has to be one of my favorite photos taken at the hospital. It was snapped by Jenny, Mattie's art therapist. She captured this special moment of Mattie giving me the valentine's he made for me that day. A day I will never forget. What I also love about this photo was Jenny captured a very familiar scene in my memory. Mattie typically liked to touch nose to nose with me and stare into my eyes. I could try to describe this to you, but the photo says it all. This position wasn't contrived, this was Mattie!


Quote of the day: Only in the agony of parting do we look into the depths of love. ~ George Eliot

After the think tank yesterday, we took our key team members out to dinner. Here is a snapshot of our group.
Back Row from left to right: Dr. Bob Noll (Children's Hospital of Pittsburgh), Peter, Dr. Andrea Patenaude (Dana Faber), Dr. Lori Wiener (NIH), Dr. Anne Kazak (Nemours)
Front row from left to right: Wendy Pelletier (Alberta Children's Hospital, Canada), Denise Tordella (Private practitioner and Mattie Miracle supporter), Vicki, and Dr. Mary Jo Kupst (Medical College of Wisconsin and Mattie Miracle consultant). It was a wonderful and lively dinner and a great way to end a productive 8 hour think tank!

Peter and I attended conference sessions for about 9 hours today. One of the keynote speakers at the conference was Dr. Philip Pizzo, a distinguished pediatric oncologist. We had the opportunity to meet Philip and he graciously acknowledged Mattie Miracle's work and mission to challenge the field to create a psychosocial standard of care. I am pictured here with several amazing leaders in the field.
From left to right are: Vicki, Dr. Andrea Patenaude, Dr. Jimmie Holland (Sloan Kettering, and considered the grandmother of psycho-oncology), Dr. Barbara Jones (University of Texas at Austin), Dr. Lori Wiener, and Dr. Philip Pizzo. 

In addition to attending the conference, we are also hosting an exhibit booth. Our friend and supporter, Dave, is helping us man this booth. This is Dave and Denise's second think tank with us and we truly value their physical and emotional support. It isn't easy to be the only set of parents who lost a child at this conference. The rest of the attendees are clinicians. Though we can understand and are intrigued by their work, their work effects us personally. So in essence the hours in sessions impact us differently. For the most part the sessions are stimulating but then we always come across the psychological camp with research illustrating that kids with cancer thrive just as well as the average healthy kid. Meaning that there are no differences in depression and anxiety levels in these two VERY different populations. Naturally Peter and I sit back and question this research since it does not apply to us or MATTIE, nor to many of the families we now interact with. Having received my doctorate, I am aware of the complexities of having a research agenda and that data can be analyzed to confirm one's theory. We would like to think that research is pure, but we can never discount the human factor. I frankly can't even wrap my head around cancer having NO psychological impact on a child! So I will leave it at that. 

The highlight of my day was watching Peter in action this morning. We attended the morning plenary, which included speakers addressing the new national standard of psychosocial care in the adult cancer world. After the talk, Peter got up to ask the speakers some questions. Peter represented the Foundation and basically told an audience of 500 people about Mattie Miracle's work and our commitment to a psychosocial standard of care in the childhood cancer world. I was very proud of him and his comments started a snow ball effect of interest. Way to go Peter!