Tonight's picture was taken at the DC Aquarium in February of 2004. This was our first and last trip to his aquarium. In this tank were alligators. You can see both of us through the windows of the tank. Mattie was fascinated by all sorts of animal creatures from an early age and we tried to nurture and educate this interest!
Quote of the day: There comes a time when something changes you... No matter the impact... Where the world no longer beats in time with you. You no longer feel amongst the fray.. And the feeling of loneliness is a brandished armor you wear the rest of your life. ~ Solange Nicole
This morning after I dropped my dad off at his memory care center, I had a scheduled conference call with a fellow childhood cancer advocate. I have known this dad for years, as his child died two years after Mattie. We had the chance to catch up and I got to hear about his new initiative, in which he invited Mattie Miracle to be a part of this work. Why is Mattie Miracle being offered a seat at the table? Because in a way, we are considered the leading advocates of psychosocial care in the country. Mattie Miracle took social and emotional care to a new scientific level, by having the vision to develop evidence based Standards of Care.
Why were Standards needed? Because there is a medical standard of care for every childhood cancer type. So regardless of where in the country a child lives, they will get the SAME medicines, the same treatments! But that same standardization does NOT apply to social and emotional support! That is very hospital specific and truly depends upon having access to private philanthropy, which funds psychosocial services. Mattie Miracle set out to change this in 2012! As we want ALL children with cancer and their families to have access to optimal psychosocial care!
How did this happen? We convened over 80 pediatric oncology psychosocial professionals from the US, Canada and the Netherlands, to develop evidence-based Standards for the psychosocial care of children with cancer and their families. We ran a symposium on Capitol Hill, two think tanks at national conferences, and participated in monthly phone calls with the development team! Over 13,000 peer-reviewed articles were included in the initial searches and reviews. From which 1,217 articles were appraised for their rigor and served as the basis for the development of the Standards of Care. The project resulted in the largest and most comprehensive compilation of psychosocial standards to date, and were published in December 2015 in a dedicated supplement of Pediatric Blood & Cancer. These historic evidence-based Standards define what children with cancer and their families must receive to effectively support their psychosocial needs from the time of diagnosis, through survivorship, or end of life and bereavement care.
In the process of talking about psychosocial issues on today's call, I learned that a fellow bereaved parent in our network committed suicide. I found this news absolutely devastating! As I said on the call today.... this truly could be ANY ONE of us who lost our child to cancer. You may think I am being dramatic, but that actually isn't the case. Here are some facts.................
- The death of a child is a traumatic stressor that takes a toll on the health of parents.
- Parents who had experienced the death of a child had a 32% higher likelihood of early mortality (defined as dying earlier than life expectancy) than their peers who did not have any deceased children, and they were more likely to die of heart disease.
- Death of a young child (1 to 6 years) was correlated with more suicide in parents, and the risk was highest the month after the death of the child.
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