Tonight's picture was taken in October of 2007. Mattie was five years old and this was his last trip to the pumpkin patch. The next year, Mattie was fighting cancer. Each October, we took Mattie to practically every fall festival that was in our area. Mattie loved the wagon rides, the games, and of course picking the perfect pumpkin. One year, we must have had 7 pumpkins by the time we attended all the festivals. Now we have no pumpkins. I haven't bought one since Mattie died.
Quote of the day: The trouble with not having a goal is that you can spend your life running up and down the field and never score. ~ Bill Copeland
It was a busy day of walking Sunny, chores, and conference calls. One of our calls was with the Association of Pediatric Hematology/Oncology Nurses (APHON). Peter and I recently presented at the APHON conference in Palm Springs this summer. APHON was the first professional organization to endorse the Standards and they were the first organization to reach out to us and ask whether we would be willing to annually fund evidence based research grants.
Not just any grants, but grants that will help with the implementation of the Standards. Music to our ears! As we learned first hand, nurses are the front line providers of interventions and interactions with children and families. Therefore, it is vital to have the nursing profession actively answering this question with us. The question being.... how do we implement the Standards in order to provide optimal psychosocial care to children and families?
It is wonderful that the Standards have been published. That was a three year labor of love, but now what? Peter and I certainly did not have the vision to create the Standards with the intention of them being shelf-ware. They must now be made tangible, usable, or in essence implementable for cancer treatment sites around the Country! How? Well that requires more research. Why? Because anyone can cobble together some services and claim they are meeting the Standards, but what does that actually mean? NOTHING. It means nothing until you create a model and then test that model of services out on children and families. After all, whatever psychosocial services children and families receive, we want there to be a measurable outcome, that indicates an increase in quality of life. That is the ultimate goal.
We had a very productive call with APHON, and it is wonderful to find professionals who are like minded and share our vision and goals. Mattie Miracle has wanted to establish a psychosocial research grant program for some time. Naturally we could have done this ourselves, but we believe partnering with the professional groups who provide the care is a more effective way to attract quality research proposals. APHON has paved the way for us, because now two other professional organizations have asked us to establish Mattie Miracle grants with them as well.
Soon Mattie Miracle will not only be funding direct supportive care to children with cancer and their families (child life positions and snack carts), providing leadership on the implementation of the psychosocial standards, but also funding quality research grants at three organizations. The beauty of this is that these organizations will oversee all the administrative work associated with the grants, the grants will be open to all their members, and Peter and I will serve on the selection committee to determine grant recipients. Exciting times for Mattie Miracle!
1 comment:
Vicki & Peter,
I am excited by this entire post. I like your word, "shelf ware " because I know your goal wasn't just to write the standards but see them put to use. I look forward to hearing more about the grants, where they will go.
The program, of which p, I was a part was small compared to what you are creating. Yet, I can't help compare how some really scared children were very different after weeks of consistent care not only of their disease but their emotional well being! I have seen it work as children progressed through therapy, trusting more, dreading less. I look so forward to all Mattie Miracle successes!
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