Tuesday, May 31, 2016

Tuesday, May 31, 2016 -- Mattie died 350 weeks ago today.

Tonight's picture was taken in May of 2006. We took Mattie to Pennsylvania for Memorial Day weekend and as you can see Mattie got a hold of my camera and decided to take some of his own photos. This was Mattie's perspective of his feet!

Quote of the day: In any situation, the best thing you can do is the right thing; the next best thing you can do is the wrong thing; the worst thing you can do is nothing. ~ Theodore Roosevelt

Peter and I were invited by Dr. Anne Kazak, a core member of our psychosocial standards team to present with her tomorrow on the National Child Traumatic Stress Network webinar. In a way, a webinar is a lot like a conference call. However, callers around the Country have access to the presentation slides we are using and can follow along virtually. Anne (a psychologist), Eric (an oncologist), and Peter and I will be discussing traumatic stress and childhood cancer. Particularly Peter and I will be focused upon our personal stories and in essence how our experiences confirm the research. 

In my opinion trauma is the MOST UNDER discussed side effect of childhood cancer. Yet it is very real for both the child and the parents. In fact, mothers of children with cancer are found to have a high incidence of PTSD from the experience. It is not something I discuss freely since I feel the majority of the world can't grasp what I witnessed and lived through. So I can appear very normal and integrated in society. However, if you know me well, you know that I am cognizant of the environment I will put myself in and I am very sensitive to my surroundings, noises, and the people around me. 

In 2010, I was personally interested in trauma and childhood cancer and began doing literature reviews on the topic. It was through my searches, that I kept coming across a researcher and clinician by the name of Dr. Anne Kazak. I read many of Anne's studies and they immediately resonated with me. Not only does she conduct sound research but it is the sensitivity and insights of her results and conclusions that captured my attention.

So literally in 2010, I wrote Anne an email letting her know about my perspectives on her research. Never did I expect her to respond, or respond with such interest. From that email, we then arranged for a conference call with Anne, and it was Anne who was the scientific chair of Mattie Miracle's Symposium on Capitol Hill in March of 2012. This was the first symposium of its kind to address the psychosocial issues of childhood cancer. If I hadn't read Anne's papers, if I hadn't emailed her, or if she never responded, we may not have a National Psychosocial Standards of Care today. Anne always jokes with me.... ever since I emailed her, she now makes it a habit to respond quickly to other parents who also email her because she says she never knows if this person will be "another Vicki."

Here is some information about tomorrow's 90 minute Webinar (noon, EST):

The National Child Traumatic Stress Network (NCTSN) is hosting its first webinar in the series entitled, “Helping a Family with Traumatic Stress when a Child has Cancer.”

This webinar presents an integrated approach to recognizing and responding to child and family traumatic stress when children have cancer. The speakers, who include a psychologist, oncologist and parents of a child who lost his battle with cancer, will explore the impact of the diagnoses and treatment on the child and family, discuss cultural considerations that may intersect with a family’s response, and describe their approach for assessing, managing and treating traumatic stress.

LIVE: Wednesday, June 1st, 2016
9:00 a.m. Pacific / 11:00 a.m. Central / 12:00 p.m. Eastern
90 Minutes

Presenters
Eric Sandler, MD – Nemours Children’s Clinic
Anne Kazak, PhD, ABPP – Nemours Center for Healthcare Delivery Science
Victoria Sardi-Brown, PhD, LPC – Mattie Miracle Cancer Foundation
Peter Brown, MBA – Mattie Miracle Cancer Foundation

To Register:
Use the following link to enroll or view the webinar the day of: http://learn.nctsn.org/course/view.php?id=447

To Listen by Phone Only:
Call 1-866-295-5950 and enter guest code 5318986#.
To submit a question or comment during the webinar, email question@nctsn.org. 

A copy of the slides may be downloaded and printed from the NCTSN Learning Center on the day of the webinar.

Technical Support
For technical issues or questions about the NCTSN Learning Center, contact help@nctsn.org.