Tonight's picture was taken in December of 2008. Mattie was home from the hospital for Christmas time. Not the best of times or happy memories, despite it being a holiday. In fact, from Mattie's cancer treatment, what resulted for me is a strong dislike for Thanksgiving and Christmas. Mainly because our last holidays together were horrific. Something you can't even imagine. Mattie was beyond miserable, in pain and dealing with a host of mental health issues. On that particular day, this wreath was dropped off for Mattie at our home. It was created by all his friends in first grade (a school year he never participated in), and each leaf on the wreath was made of paper, and each piece of paper contained a written message for Mattie. We had this wreath hanging on our front door for the longest time.
Quote of the day: The psychosocial issues do not end when the medical treatment does. ~ Victoria Sardi-Brown
Headache and all, I ran a 6 hour long licensure board meeting today. We had about 20 people from the public come before the board, so needless to say, I am tired. But that is only one of my jobs to complete for the day. My other hats include Foundation leader and caregiver, and that work now begins.
I mentioned on the blog a week or so ago, that the editor of Cure Today reached out to me. They wanted to write an article on Mattie Miracle. Since I have had people interview us before with less than 100% accuracy, I decided to do this interview by email. That way I could write our responses to the questions and the chances of the content accurately depicting the Foundation would be high. The article came out today and I posted a link to it below. Despite writing each response thoroughly, something did get lost in the translation. You don't get a chance to proof someone else's article, but I did want to point out the correction to my readers.
As the article points out, in March of 2012, Mattie Miracle voiced its vision for the need for evidence based psychosocial standards of care at our Capitol Hill Symposium. Mainly because psychosocial care varies greatly by treatment facility and we want to see a more standardized approach to this important care. Care and support that should not only be offered at diagnosis, but throughout the cancer journey, which includes survivorship or bereavement care. The article implies that the Symposium was hosted to DEVELOP Standards of Care. Not exactly! The Symposium was designed to call attention to the importance of psychosocial care for childhood cancer and to highlight cutting edge research and the issues children and family face. The Symposium served as the spring board for our vision. After the Symposium, Mattie Miracle assembled a team of over 80 health care professionals from the US, Canada, and the Netherlands. This team worked for three years on the rigorous methodological process to create evidence based Standards. Which of course resulted in the publication of the Standards in 2015, in a top tier medical journal, Pediatric Blood & Cancer. A publication Mattie Miracle funded and paid for open access, so the public can download the articles for free indefinitely.
Addressing The Psychosocial Side Of Childhood Cancer:
https://www.curetoday.com/articles/addressing-the-psychosocial-side-of-childhood-cancer-
1 comment:
Vicki, While Indo not subscribe to CURE MAGAZINE, I have on occasion read an article or two. I will go back & open your link to read what was written. I am glad you cleared up what they missed. I don't like to be interviewed for Growing Hope, though I have been. Some things that are written are inaccurate, then I vow to never talk again. Doing an online email answering questions seems so ideal yet they still dud not get the message!
The understanding of Psychosocial varies from place to place & from one person to another. This word to me means total involvement with child & family which doesn't end at quitting work time. I am so hopeful people will take these standards, implement them into the total care of the patient and their family. They are so needed,, from diagnosis, to treatment to survivorship and remembering that this also includes the support families whose child died from their Cancer need. I have great faith & hope in Mattie Miracle
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