Friday, September 23, 2016
Tonight's picture was taken in October of 2004. That day, Mattie's preschool went on a field trip to Butler's Orchard. The hay wagon ride took us right into the pumpkin field. I snapped this photo of Mattie. Ironically, a few years later, we brought Mattie back to this same spot and took the photo below. I remember snapping that photo and to me that photo is famous, because I associate it with Mattie Miracle. That pumpkin shot is on our website and in all of our conference PowerPoints!
Taken in October 2007. The face of Mattie Miracle!
Quote of the day: Bitterness is like cancer. It eats upon the host. But anger is like fire. It burns it all clean. ~ Maya Angelou
Mattie Miracle attended the 7th Annual Childhood Cancer Caucus on Capitol Hill today. We heard from the Caucus Co-Chairs (Rep. Michael McCaul, Rep. Chris Van Hollen, Rep. Jackie Speier, and Rep. Mike Kelly), medical leaders in the field, as well as cancer survivors. Survivors did a beautiful job in a short period of time describing the long term medical effects and social-emotional struggles they continue to face after the treatment is over. As one survivor said..... childhood cancer is a LIFETIME DIAGNOSIS.
Mattie Miracle stands firmly behind the fact that treating childhood cancer effectively means discussing BOTH the medicine and psychosocial support. Yet these two aspects of care continue to be compartmentalized and as a result comprehensive cancer care can never be effectively achieved. If there is any doubt about this just listen to a childhood cancer survivor and his/her family for five minutes. The number one issue ALWAYS discussed is the social, emotional and psychological consequences of the treatment!
CHILDHOOD CANCER IS "NOT JUST ABOUT THE MEDICINE" and it is Mattie Miracle's mission to educate the community, legislators, and providers to this reality!
There were multiple congressional greetings today. The first one was given by Rep. Michael McCaul (R-TX). The second greeting was given by Rep. Chris Van Hollen (D-MD).
An audience of about two hundred people heard from 3 cancer survivors:
Luke Gidden, Osteosarcoma
Sydni Jankowski, Leukemia
Greg Aune, Hodgkin's Lymphoma
Mattie Miracle could definitely add to this list of problems, since there is NO mention of the complexities of psychosocial care and the importance of implementing a standard of psychosocial care at every treatment site (so that children and families have access to a minimum level of care, care which can positively impact medical outcomes). Not to mention the challenges associated with the reimbursement of psychosocial care.
For those of you interested in learning more about the STAR Act, I encourage you to check out the link below. Mattie Miracle is proud to have added a mental health/psychosocial piece to this legislation (pp. 28-34)
https://mccaul.house.gov/ sites/mccaul.house.gov/ files/ Childhood%20Cancer%20Star%2 0Act_0.pdf
For those of you interested in learning more about the STAR Act, I encourage you to check out the link below. Mattie Miracle is proud to have added a mental health/psychosocial piece to this legislation (pp. 28-34)
https://mccaul.house.gov/
Three dedicated cancer dads and advocates, all of whom lost a child to cancer.
Joe McDonough, Peter Brown, and Jonathan Agin
Joe McDonough, Peter Brown, and Jonathan Agin
1 comment:
Vicki,
I say YES, YES, YES, to every part of your blog. I want to give a bigger comment on the pictures of Mattie and your quote.
I love all pictures of Mattie. Your pictures of the various events, ages of Mattie, help me feel like I do know him a little. He was a beautiful child and obviously very loved. The pictures with the pumpkins are precious. I love the button, you & Peter wear.
Your quote is so true about bitterness and anger. Bitterness, just rolls around our head, it doesn't help us look past it whereas anger about something injustice does put fire into our spirit to set out to fix it. I loved this post!!!!
Post a Comment