Monday, January 30, 2017

Monday, January 30, 2017

Tonight's picture was taken in February of 2009. Mattie was sitting in his wheelchair outside his hospital room door. You will notice that I taped Mattie's masterpieces on the door, so those who entered the room would have to see them. Mattie liked to see his artwork on display. But I did this for multiple reasons. First, I wanted Mattie to see his work and be proud of them, second, I wanted to remind those entering the room that a child was inside. One that was defined not just by his disease, and third, these paintings sometimes enabled people to initiate conversations with Mattie and to engage with him, when typically he wanted to shut out the world. 


Quote of the day: It’s so hard to communicate because there are so many moving parts. There’s presentation and there’s interpretation
and they’re so dependent on each other it makes things very difficult. ~ Garth Stein


Last week was the Roundtable and I can't say things have really lightened up for me since the completion of that event. Tomorrow, I will be having a two hour conference call with an undergraduate class at the University of Guelph in Canada. A psychology professor contacted me a year ago, and asked if Mattie Miracle would work with her class on a community service project. She read about the psychosocial standards of care and wanted to know if her students could get involved in the dissemination process. Basically the students are assigned to review the standards and to create a one page handout on each standard that gives an overview of it, its importance and how it will help direct care. These handouts will be geared to two separate groups of people.... professionals and parents/family caregivers. 

Unlike my experiences working with the George Washington University and Georgetown University, this university has issues with technology. Which isn't so much of a problem, unless you have a person like myself who is coming to class virtually. Because of issues on their end, they will be able to hear me and see my presentation but I won't be able to see or hear them. That may not sound challenging, but to me it is impossible. When I talk about Mattie, childhood cancer and the Foundation, it is imperative to me that I see non-verbals and can assess audience feedback. Based on my observations I can tweak the message and how the content is delivered. So literally I am scheduled to talk for two hours tomorrow, presenting like a soliloquy. 

I have developed a 70 slide presentation deck to assist in my session. I will be covering who is Mattie, facts about childhood cancer, the importance of psychosocial care, the Mattie Miracle Cancer Foundation and what we do, and finally the developmental process in the creation of the Standards of Care. 

This slide illustrates some of the psychosocial issues we faced with Mattie (exhaustion, Depression, Pain, Sadness, and Isolation).  In addition, I cite research that discusses issues that arise with childhood cancer and how psychosocial well being affects physical functioning and treatment outcomes.

This to me is a happier slide than the one above. It illustrates Mattie being a child, filled with activities and smiles when psychosocial care was provided. 

Naturally the research indicates that psychosocial care can manage pain, fatigue, and symptoms and it can improve quality of life. 

Childhood cancer facts.... typically these facts catch students by surprise. Mainly because childhood cancer isn't discussed often in society and therefore if it isn't discussed it is considered rare or non-existent. 

The reality... of which most people don't realize is that many families can go bankrupt caring for a child with cancer. Insurances don't always cover every aspect of care, or have lifetime caps of coverage. 

This slide is always a shocker, because for the most part children are treated with drugs from the 1950s and 1960s. Few new drugs have been developed to help children. 

The psychosocial issues

The psychosocial impact 

Clearly if you look at this slide, it appears that survival rates have increased significantly for all cancers over the last several decades. It looks good on the surface, but these are five year survival rates. Meaning that for example with Hodgkin Lymphoma (the yellow line) there maybe an 85% survival rate, which means out of 100 kids, 85 children are still alive five years after diagnosis. If you are a child who is in the 15% (the ones who die), I can assure you this 85% survival rate means nothing. The research also doesn't highlight how many of these 85% five-year survivors relapsed, developed secondary cancers, or even died after five years. So the five year rule is truly NOT the whole picture of childhood cancer. 

To me this is an interesting bar graph because it shows the amount of trauma children and parents experience in different hospital units/dealing with different medical issues. It is noteworthy that the yellow is cancer, which doesn't surprise me in the least. Childhood cancer is traumatic for both the child and the parents..... and we are living proof of this.