Wednesday, February 10, 2016

Wednesday, February 10, 2016

Tonight's picture was taken on February 10, 2009. Seven years old today. That alone is hard to come to terms with.... this is what our life looked like seven years ago. 

Whenever we were home between treatments, which never lasted long, I tried to encourage Mattie to use his walker and take a few steps. Each steps was exhausting and painful. What I love about this photo was Mattie's head. Even bald Mattie had an adorable and perfectly shaped head. 






Quote of the day: You can not do a kindness too soon for you never know how soon it will be too late. ~ Ralph Waldo Emerson

As I mentioned last night in the blog, Peter and I were interviewed by Karen Allyn at 8:30pm. Karen is a Washington Broadcaster, whose show airs on a local TV channel in Montgomery County, MD. 

Karen contacted me after our Washington Post article was published. She felt that our human interest story would resonate with her audience and she also wanted to bring attention to our mission and work. 

When we got to the studio we have the opportunity to chat with Karen's daughter, and the irony is my college roommate knows Karen and her family. It is a small world indeed. 

Peter and I have different conversational styles and we focus on different things at times. Which is actually a good, because with both of our skill sets we can run a Foundation. Which is no easy task, yet for me I went into this interview hoping for one thing, and landed up upset and not happy about how it went. I honestly thought we would have more time to focus on Mattie and his battle and have a discussion on how specifically that led to the formation of the Foundation, and what purpose the Foundation serves to us. All of that would be emotionally laden content, and frankly I can understand why Karen steered us away from this. That would probably be a turn off to her listeners. Yet this content to me is REAL and important and when I can't lay the ground work for the Foundation and our work, I get frustrated. 

There was a lot of content to cover in 26 minutes, but Peter did a stellar job at highlighting the Psychosocial Standards, why they had to be developed and the next steps needed to get them implemented. 

However, Karen asked us a good question.... why haven't standards been created before now? Mainly because it seems like a no brainer that such psychosocial support would be needed. 

However, despite the fact that this may seem like a no brainer, I think the majority of health care professionals do not understand or value the importance of psychosocial care. In fact, the overall stigma of mental health issues is pervasive in our society but they are also prevalent in our medical system. I truly believe that some physicians can't grasp that toxic cancer treatments have devastating psychosocial effects on children and their families. I know it was true in our case. After Mattie's surgeries we reported PTSD like symptoms and the responses we kept getting from the medical community were that Mattie was having a reaction to pain medication. Of course upon psychiatric assessment, we learned that indeed Mattie had profound issues that produced several diagnoses: clinical depression, anxiety, and medical traumatic stress. So part of the explanation for the fact that psychosocial care is not included in comprehensive cancer care has to do with the acceptance within the medical community and because most of this care isn't reimbursable, it gets looked upon as an adjunct service. If it can get funded by private philanthropy great, but if not, no problem.

The other issue is there needs to be a demand. The childhood cancer community, which includes family advocates have to start demanding this type of care. When there is a demand and pressure, systems tend to comply. Cancer advocates are great about beating the drum for bio-medical research and drug development. Yet research shows that psychosocial care increases medical adherence to treatment, helps to manage pain symptoms, and enhances overall quality of life. Therefore, if the WHOLE child is effectively treated, both the bio-medical and psychological aspects of care must be addressed. It is a mindset change that is needed for effective 21st century cancer care.