Tonight's picture was taken in July of 2009. As you can see Mattie was in the out-patient physical therapy clinic at the hospital. Whether Mattie was in the hospital or out of the hospital, starting in the Spring of 2009 he was consistently doing physical therapy. Remember the goal back then was to retrain Mattie to walk so he could return to school. We had no idea that we would be facing a terminal diagnosis the following month. In this photo, Mattie was sandwiched between Anna (his therapist) and his close buddy in cancer (Brandon). Brandon was diagnosed with cancer around the same time as Mattie, so they went through treatment together. Even after Brandon's treatment was completed, he would come back to the hospital on a regular basis to visit Mattie. A true friend!
Quote of the day: The most courageous act is still to think for yourself. Aloud. ~ Coco Chanel
I think Coco Chanel's quote is brilliant and spot on. This year Mattie Miracle launched two research grants. One hosted through the Association of Pediatric Hematology/Oncology Nurses (APHON) and the other through the American Psychosocial Oncology Society (APOS). For more info on the Mattie Miracle APOS grant, go to: Mattie Miracle Grant
For several weeks now, I have been reviewing proposals. Keep in mind that we originally received over 20 grant applications, and from there we whittled it down to 12. From that 12, we had to select one. This one recipient will get a $10,000 grant to conduct a study that will help implement the Psychosocial Standards of Care for Children with Cancer and Their Families.
Because the grant is administratively handled through a professional association, the association has a research review committee which evaluates the scientific rigor of the proposals. However, the condition on any of Mattie Miracle grants is the simple fact that we want access to all the proposals, all the rating criteria, and decisions.
This week, I began to see what the committee deemed important and top quality research to fund, wasn't in line with my thinking. Typically I am on the same page with this group of professionals, who I have worked with many since 2012. So when I realized that we weren't, I truly wasn't sure how to handle it.
Never however did I waiver in my feelings about the research. I wasn't swayed by their evaluations what so ever. Instead I would say I was getting frustrated and as Peter knows, when I get frustrated, I can sit with that for a long time, until I simply get mad and then have to do something about it.
I think this is where I differ from a pure researcher. I think research is important but not because it generates more questions and MORE RESEARCH. To me research has to produce something meaningful that will help guide clinical care. So in essence the research we wish to fund must be able to provide a model, an intervention, or strategy that will help other cancer treatment sites implement the Standards of Care. So what did I do about this conflict of difference?
Given the top leaders in the field evaluating these proposals, one could have been intimidated and therefore compliant. That's not me. So onto option two. Option two was I wrote an email to the entire review committee last night and in a professional manner explained my point of view. I felt that the committee had to hear directly from me. I wasn't going to deliver this message any longer through an intermediary. Want to know the result of this group email?
The result was I helped the committee streamline their decisions today and they thanked me for my clarity and were eager to continue working with us. So the moral of the story is to always stick with what you believe in and don't be afraid to speak ALOUD. As I mentioned to the researchers, I have the lived experience with childhood cancer and this gives me insights about what will and will not work when designing studies for this population. If ever in doubt, teacher Mattie is a live and well in me!
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