Mattie Miracle 8th Annual Walk & Family Festival was an $88,000 Success!!!

Mattie Miracle Cancer Foundation Promotional Video

Thank you for keeping Mattie's memory alive!

Dear Mattie Blog Readers,

It means a great deal to us that you take the time to write to us and to share your thoughts, feelings, and reflections on Mattie's battle and death. Your messages are very meaningful to us and help support us through very challenging times. To you we are forever grateful. As my readers know, I promised to write the blog for a year after Mattie's death, which would mean that I could technically stop writing on September 9, 2010. However, at the moment, I feel like our journey with grief still needs to be processed and fortunately I have a willing support network still committed to reading. Therefore, the blog continues on. If I should find the need to stop writing, I assure you I will give you advanced notice. In the mean time, thank you for reading, thank you for having the courage to share this journey with us, and most importantly thank you for keeping Mattie's memory alive.


As Mattie would say, Ooga Booga (meaning, I LOVE YOU)! Vicki and Peter



The Mattie Miracle Cancer Foundation celebrates its 7th anniversary!

The Mattie Miracle Cancer Foundation was created in the honor of Mattie.

We are a 501(c)(3) Public Charity. We are dedicated to increasing childhood cancer awareness, education, advocacy, research and psychosocial support services to children, their families and medical personnel. Children and their families will be supported throughout the cancer treatment journey, to ensure access to quality psychosocial and mental health care, and to enable children to cope with cancer so they can lead happy and productive lives. Please visit the website at: www.mattiemiracle.com and take some time to explore the site.

We have only gotten this far because of people like yourself, who have supported us through thick and thin. So thank you for your continued support and caring, and remember:

.... Let's Make the Miracle Happen and Stomp Out Childhood Cancer!

A Remembrance Video of Mattie

Random Shots of Mattie, Family and Friends

January 24, 2017

Tuesday, January 24, 2017

Tuesday, January 24, 2017 --- Mattie died 384 weeks ago today. 

Tonight's picture was taken in January of 2009. Mattie was home between treatments and what I loved about this photo was it captured the beauty and creativity of Mattie. Mattie received something in a Styrofoam container, and as you can see Mattie then got creative and turned the container into a pretend bicycle helmet with colorful duct tape. With Mattie there were possibilities in everything!







Quote of the day: Let me tell you the secret that has led me to my goals: my strength lies solely in my tenacity.Louis Pasteur


I am SO glad that we had Herman, our Foundation photographer on hand today because it is very hard to capture all aspects of the day and to do it well. This was our group photo right before lunch. We did have thirty people in attendance, but with people bouncing in and out, we did not get all of them in this photo. 



This was today's agenda:



Check-in & Continental Breakfast                                                                                                
8:00–8:30am

Welcome Remarks, Introductions, & Objectives                                                                       
8:30- 8:45am                                                                                                                                                   

TOPIC 1: OUTCOMES
8:45 –9:45am
·        Pam Hinds, Ph.D., RN, FAAN (Director, Nursing Research and
Quality Outcomes at Children's National Medical Center)
·        Lori Wiener, Ph.D., DCSW (Co-Director, Behavioral Health Core
Head, Psychosocial Support and Research Program at NCI)

BREAK                                                                                                                                                     
9:45–10:00am

TOPIC 2: LEGISLATIVE/POLICY                                                
10:00–10:45am
·        Kevin Mathis, J.D. (Senior Legislative Counsel at St. Baldrick's
Foundation)
·        David Pugach, J.D. (VP of Federal Relations for the
American Cancer Society Cancer Action Network)

TOPIC 3:  RESOURCING                                                                                                                      10:45-11:45am
·        Anne Kazak, Ph.D., ABPP (Co-Director of the Nemours
Center for Healthcare Delivery Science)

GROUP PHOTO & LUNCH                                                         
11:45–12:45pm
·        Remarks from Reps. McCaul & Speier @12:30pm

TOPIC 4:  REIMBURSEMENT
12:45–1:45pm
·        Patricia Martin, RN, BSN (Director of Specialty Network Management
For Payment Innovation at Anthem)

TOPIC 5: ACCREDITATION                               
1:45–2:45pm
·        Lynne Wagner, Ph.D. (Professor, Social Sciences &
Health Policy Comprehensive Cancer Center at Wake Forest
School of Medicine)

BREAK                                                                                                                                           
2:45-3:00pm                                                                                                                                                                                                                                                                                                    
TOPIC 6:  DELIVERY MODELS                                                                                                       
3:00–4:00pm
·        Nina Muriel, MD, MPH (Chief, Division of Pediatric
Psychosocial Oncology, Department of Psychosocial
Oncology and Palliative Care, Dana-Farber Cancer Institute)
·        Amanda Thompson, Ph.D. (Pediatric Psychologist and Director
of Patient Support Services in the Center for Cancer and
Blood Disorders at National Children's Medical Center)
Closing Remarks                                                                                                                                  4:00pm


One of the sessions was run by a payor, Anthem. We have been very lucky to have connected with Pat at Anthem. She has pulled in many scientists within her health insurance agency and they stand behind the psychosocial standards. She shared with us MANY great surprises with regard to Anthem's position on the standards and next steps they would like to take. I can't officially report them yet, but let me say we are thrilled. 


This is Todd Schuerhoff. Todd is a consultant at Dominion Consulting. Todd and Peter knew each other when they both worked at Arthur Andersen Consulting. Dominion is our largest corporate sponsor and has been so since 2011. Dominion was kind enough to give us the expertise of two of their consultants today to help facilitate the roundtable. 
This is Joe Costello, our second consultant from Dominion and again Peter and Joe worked together at Arthur Andersen Consulting. 
Pictured with Peter is Lori. Lori has been the leader of the psychosocial standards project since 2012. Lori works at the National Cancer Institute and is about my height. She maybe short, but she is powerful and what I learned is it is hard to say no to Lori. She is pleasantly persistent, works intensely, and is greatly respected. As we say to Lori all the time, if it weren't for her management of the project, the Standards would never have been published. She ran an enormous undertaking with over 80 health care professionals. 


Pictured here in blue is Anne Kazak (Nemours Children's Health System, DE) and next to her is Amanda Thompson (Children's National Health System in DC). Both are chapter contributors of the Psychosocial Standards. The funny story is I reached out to Anne in 2010, through an email. I read some of her research articles about childhood cancer and trauma. They resonated with me so I wrote to her. Never thinking she would be the person to respond back! When we did our first symposium on Capitol Hill in 2012, Anne was our scientific chair of the event. 

Pictured here are Mary Jo Kupst and Nina Muriel. Both are members of our core implementation team. Mary Jo is from the Medical College of Wisconsin and Nina is from Dana-Farber Cancer Institute. 
This is Pat Martin from Anthem! Everyone loved Pat today and the investment she is making into understanding and using the standards. 
This is Lynne Wagner from Wake Forest Medical School. Lynne was instrumental in embedding a psychosocial standard of care within the Commission on Cancer hospital accreditation process. The standard in question is applicable for adult oncology, but we are trying to understand what she did to determine if this can be done for pediatrics and our standards. 

We had Peter Adamson in attendance as well. Peter is the chair of the Children's Oncology Group. The Children’s Oncology Group (COG), a National Cancer Institute supported clinical trials group, is the world’s largest organization devoted exclusively to childhood and adolescent cancer research. The COG unites more than 9,000 experts in childhood cancer at more than 200 leading children’s hospitals, universities, and cancer centers across North America, Australia, New Zealand, and Europe in the fight against childhood cancer. Today, more than 90% of 14,000 children and adolescents diagnosed with cancer each year in the United States are cared for at Children’s Oncology Group member institutions. 

This is Patrice, the head of child life at Johns Hopkins Medical Center. We feel it is very important to have all the psychosocial disciplines present at the table and Patrice adds an important lens and insights.  






After lunch we acknowledged legislators. You can see my scripts for these awards in Saturday's blog posting. Pictured with us is Rep. Mike McCaul. 
Pictured with us was Rep. Jackie Speier. 
Pictured with us is the legislative aide from Senator Van Hollen's office, accepting the award on his behalf. 
Isn't this photo adorable? Herman did a great job capturing the moment. Rep. Speier is very engaging, super easy to talk to, and personal. 
Talking with Rep. McCaul in the hallway.













Rep. McCaul's staffer captured this video of him accepting his Childhood Cancer Champion plague:

1 comment:

Margy Jost said...

Vicki & Peter,

It looks like a very successful day!!! Thanks for sharing on your blog! I was amazing!