Tonight's picture was taken in March of 2009. You maybe wondering what was going on in this photo? What was going on was a physical therapy session! Mattie had an entourage with him including Mary (a child life volunteer), Meg (a child life intern), a physical therapy intern on my left and the fellow in front is Brandon (Mattie's best buddy and fellow cancer patient). Brandon and Meg were moving their hands because they were dancing to ABBA's Dancing Queen! It wasn't unusual for ABBA to be blaring down the hallway to inspire Mattie to move his body! Which is why every Foundation walk is started with the playing of Dancing Queen! This afternoon, I went back to the hospital to push our Mattie Miracle Snack cart. I do this once a month and what people do not understand is that I have walked these hallways many a time, I have lived endlessly in the rooms, and I though years may have gone by, I remember the torture quite well.
Quote of the day: You may not have saved a lot of money in your life, but if you have saved a lot of heartaches for other folks, you are a pretty rich man. ~ Seth Parker
It was a super busy day, don't ask me why. In between doing so many things, I naturally have Sunny to walk. Who reminds me when it is break time. At some point today I went to the Hospital to push our snack cart around the units. I do this every month. I met all sorts of families today. Two of which couldn't say enough about the cart. The ironic thing though is they think the cart is provided by Georgetown. Which it is NOT! But they feel Georgetown is special because of this caring and thoughtful service. Rather a riot no?! I don't like correcting parents and families because they have enough on their minds and plates and the point of the cart is to meet their needs, not to highlight where items are coming from! I also know that when I was in their situation, it neither mattered who provided the service, how it was funded, or what organization was behind it. That may sound harsh, but it is true. When dealing with life and death situations, that is the priority and the other stuff is nonsense.
While roaming the units with the cart, I noticed a young physician who looked very familiar to me. I literally stopped her in her tracks and said..... "do I know you!?" At which point she said, we knew each other. Seven years ago, she was a medical resident and cared for Mattie. Now she is a chief attending physician. How times change! But I remember Sarah very well. She has a great disposition, was wonderful with Mattie, and she even dressed up as Harry Potter for Halloween. The fact that she dressed up caught Mattie's attention. I must admit I truly disliked most of the residents we had to deal with, for MANY reasons. But there were two I liked and Sarah was one of them. Sarah says that she always remembers Mattie and that he had a profound impact on her career. I unfortunately did not get to ask her why but hopefully I will run into her again.
The other highlights of the day came by email. A national nursing organization wants to partner with us to financially support evidence based research that would specifically assess how the standards are being implemented in clinical practice. It is an outstanding opportunity that we are looking into because we know we need evidence based interventions that clinicians can use to meet the requirements of each psychosocial standard. We have worked with this nursing organization before and in 2016, they presented us with a national award.
The second piece of information that caught me off guard today is that Mattie Miracle has been invited to serve with the Cancer Coalition of VA to develop the five year cancer plan for Virginia. Each State has its own cancer plan and a plan guides cancer care in one's region. This is a huge invitational ask! Naturally I decided to read through Virginia's cancer plan (go to this link:
http://cancercoalitionofvirginia.org/PDFs/About/ActionPlan.pdf), and what I QUICKLY assessed is childhood cancer is NOT even mentioned as a cancer impacting the residents of Virginia. Clearly not the reality! If that wasn't bad enough there is NO mention of the need for psychosocial care and support. So I wrote back the representative who contacted me and asked whether the intention is to include childhood cancer and psychosocial care in this upcoming plan. The answer is yes and this is where Mattie Miracle can help them. Music to our ears, so hopefully we will connect by phone soon.
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For more information about Cancer Plans, I refer you to this article written by the American Childhood Cancer Organization:
http://www.acco.org/wp-content/uploads/2015/04/Is-Childhood-Cancer-Included-in-YOUR-States-Cancer-Plan.pdf
Specifics from the article worth highlighting......................
In 1998, the Centers for Disease Control and Prevention (CDC) funded the first comprehensive cancer control programs in five states – specifically Colorado, Massachusetts, Michigan, North Carolina and Texas. Since that time, the CDC through the establishment of the National Comprehensive Cancer Control Program (NCCCP) has provided grants to assist all 50 states, the District of Columbia, seven tribes and seven U.S. Associated Pacific Islands and Territories with the development and implementation of cancer control plans. These plans guide and coordinate efforts within the state to gather state specific cancer incidence and mortality data (cancer surveillance), as well as support coordinated efforts to increase access to quality care and treatment, promote prevention and early detection programs, develop education programs to promote healthy lifestyle choices to enhance the quality of life of survivors, and strategies to reduce health disparities.
Each state is charged with identifying and implementing goals and strategies specific to address their cancer burden and needs. The plans are often implemented over a four or five year period and include strategies such as the passing of legislative policies, and investments in early detection such as state sponsored free breast and cervical cancer screenings to low and uninsured women. Plans also include cancer prevention, education, and evidence based research initiatives to identify and evaluate state cancer priorities and outcomes of the plans as guidance for subsequent plans.
Sadly, childhood cancer for the most part has been a ‘forgotten child’ at this table. In spite of the fact that childhood cancer remains the leading cause of death by disease for our nation’s children under the age of 15 years, twenty-three states have NO mention of childhood cancer in their state’s cancer plans. Children are solely mentioned in context of education and awareness programs aimed at healthy children. These include education programs such as smoking prevention and cessation, healthy lifestyle choices such as exercise and healthy eating with the focus being placed on reducing the cancer burden as adults.
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