Thursday, March 26, 2020

Thursday, March 26, 2020

Tonight's picture was taken in April of 2009. Mattie requested certain foods for dinner, so we went to one of the restaurants on the hospital's campus and got Mattie his starches..... pasta and pizza. We went with whatever Mattie requested because our goal was to get him to eat something. Typically he wasn't hungry on treatment. So whenever he requested a food, we would run to get it. Notice the line up of cars on Mattie's container. Mattie never traveled anywhere without a toy car!






Quote of the day: Today's coronavirus counts from Johns Hopkins. 

1. 79,785 diagnosed with the virus
2. 1,124 people who died from the virus

Today was my first experience participating in a virtual conference session. Peter and I were scheduled to host a psychosocial symposium in Portland, Oregon in the beginning of March. Of course the conference got canceled, but the American Psychosocial Oncology Society decided to host its keynote speakers and 30 of their sessions on-line. 

Peter is used to on-line presenting! I am not. So I got my first taste of using Zoom. Rather remarkable what it can accomplish. You can hear people from all over the the country and you can share slides and present content at the same time. 


This was our 90 minute agenda. I was opening up the session. Since we each had a time limit, I wrote out what I planned on saying. I typically don't do this for live presentations. As I feed off of people in the audience. So presenting into a computer, is a much different experience for me. 

Below are my slides that I presented today...............

1. Good morning, I am Victoria Sardi-Brown and I am the president of the Mattie Miracle Cancer Foundation.
2. It is wonderful to be a Part of this distinguished panel and Mattie Miracle is proud to be able to fund three of the implementation research studies that will be presented today.
3. I have the honor of opening this session by discussing…. why we are here? I think the answer to that question could be different for each of us on this panel and even for those of you who are listening to this presentation. Certainly, we are all here because the Psychosocial standards of care are historic evidence-based standards that inspire both innovative research and the delivery of optimal care for the children with cancer and their families. 
4. Yet from my perspective…. we are here….. thanks to Mattie Brown, the cute little boy you see on this slide. Mattie was the inspiration for the development of the Standards and as his mom, every time we talk about the standards, implement them in research or in practice, you are helping us keep Mattie’s memory alive and are preserving his legacy. 

1. Peter and I are passionate about psychosocial care because we learned about its importance first hand through our greatest teacher, Mattie. 
2. Mattie was our only child and was diagnosed with osteosarcoma when he was 6 years old. He had four primary bone tumors at diagnosis and endured 10 months of chemotherapy, two limb salvaging surgeries, experimental treatment and radiation. 
3. This just lists the medical treatment. But what we quickly learned were all these treatments had profound psychological and social consequences on both Mattie and us.  
4. So much so that three months into Mattie’s treatment he was diagnosed with clinical depression, anxiety and medical traumatic stress. Issues he did not have prior to diagnosis. 

1. Two months after Mattie died, we created the Mattie Miracle Cancer Foundation. 
2. We are the only non-profit dedicated to psychosocial support, awareness, advocacy, and research. 
3. For 11 years, we have been spreading the message that childhood cancer is not just about the medicine and that psychosocial care must be a part of comprehensive cancer care. 

1. Mattie Miracle is proud that the Psychosocial Standards of Care were published in 2015 and because of our commitment to the Standards we funded indefinite open access to these Standards for professionals and the advocacy community.
2. As you can see the actual publication of the Standards is about an inch thick, or around 900 pages. It is a substantial scientific publication, yet with the companion tools Amanda will highlight, I think it will make it easier for clinicians to apply the standards to their treatment sites. 

There are 15 standards of care and the beauty of these Standards is they address everything from diagnosis, treatment, survivorship and end of life and bereavement care. In addition, they focus on the child and the entire family system.

These 9 professionals are part of the core team for the development and now implementation of the Standards of Care. I used to refer to them as Mattie Miracle’s dream team, but now I call them the rainmakers. I believe they have earned this title as each of them are amazing individuals who have advanced the practice and research of psychosocial care. 

Mattie Miracle is passionate about the implementation of the Standards. We do not want them to be shelf ware. Therefore in 2018, we developed evidence based implementation grants. In less than two years we have donated over $60,000 in research funding. 

1. This slide illustrates our wonderful grant recipients through American Psychosocial Oncology Society. They represent six different institutions and their research covers 6 out of the 15 Standards of Care. 
2. We are honored to support the innovative work of Kim, Kristin, and Alex and we are happy they can share their research with us today. 

The session went VERY well today! The researchers who we funded are outstanding individuals. They presented beautifully and their work is innovative..... one created a text message reminder system to get teens to comply with medication adherence, another designed an online evidence based support program for parents of children with cancer, and the third researcher investigated the barriers to providing supportive care for siblings of children with cancer and then developed an online tool kit to help other hospitals. 

As one research told me today, she is proud to be a "Mattie Miracle Research Ambassador!" LOVE IT!