Thursday, February 28, 2019

Thursday, February 28, 2019

Tonight's picture was taken in March of 2006. This was a very typical scene in our home. Building materials everywhere and Mattie creating. Of course with the height on this tinker toy building, Mattie got a little help from Peter. I will always recall the stark contrast in our home after Mattie died. We went from a home filled to capacity with kid things and a lot of activity and energy, to a home without a child. It took me a lot of time to get used to accepting that change. 







Quote of the day: Because meetings involve people, things can and will go wrong. Provide first aid when necessary. ~ Emily M. Axelrod

This morning we started off our day by listening to the morning greeting, followed by the keynote speaker. This is the American Psychosocial Oncology Society's president, Dr. Teresa DeShields. I had the pleasure of meeting her today. 

Ironically what she did not realize is that when I was in my doctoral program, my dissertation was on family caregiver stress. Which is DeShield's area of specialty. In fact, I remember reading many of her articles and citing them in my dissertation. So for me, it was wonderful to put a face to a name I knew at one time quite well. 

We attended several sessions today. One of which was on the financial burden of childhood cancer, or as researchers call it, "financial toxicity." It was a panel presentation of about four researchers, each sharing their cutting edge work. What caught my attention in one study is she assessed the perspectives of primary and secondary caregivers of children with cancer. In the case of this research, the majority of the primary caregivers were moms and the secondary caregivers were dads. This truly caught my attention, because I think assessing the financial burdens felt by moms versus dads is vital, as we may perceive the toxicity of the burden differently. I know in my role, I took on the majority of the day to day stresses of Mattie's care (while Peter was at work -- trying to keep money coming in and health insurance), but I did not focus on the financial burden because guess who was worried about that?.... Peter! I am glad that research is paying attention to these role differences and how this impacts stress and family functioning. 

This afternoon we were invited to take part in the Association's award ceremony. This is the first year we joined forces with the American Psychosocial Oncology Society to offer research grants. 

We had the opportunity to present Dr. Kimberly Canter this award today. 

Peter captured me speaking and even video recorded my four minute presentation. The transcript of what I said is below, and I think it highlights Mattie Miracle's position on the Psychosocial Standards of Care as well as our commitment to their implementation. 

Me with Dr. Kimberly Canter. Who is delightful and very appreciative of the $10,000 grant from us. 

Peter and me with Kim. 

Later in the day, we attended poster sessions. The title of this presentation was "If you build it, they will come." What do you think this was referring to? THE PSYCHOSOCIAL STANDARDS OF CARE!!! 

It is very refreshing to meet people who have read the standards and are running with them at their treatment sites. This is Dr. Joanna Patten and she is at Seattle Children's Hospital. 

This is Ashley Moss, who works with Joanna Patten in Seattle. Ashley conducted a study at her hospital about a psychosocial screener used with childhood cancer survivors. Ironically before this study, survivors weren't assessed for psychosocial concerns. Needless to say, survivors reported sadness, anxiety, etc, and the screener opened up conversations between patients and their health care providers, in line with the Psychosocial Standards of Care. 

Meanwhile, the hotel saga continues! This was what was outside our room today, in the hallway. Honestly!!! What is this? Well the answer is mattress were coming back into all the rooms. Remember I mentioned that the rooms were used for a pharmacy career day yesterday. Interviews with perspective employees were taking place up and down the hallway. Now that the career day is done, rooms are being re-assembled. You have to ask why put guests on such a floor while this is taking place?! 

I tried talking to the hotel manager and when I did not get what I wanted, I moved up the chain to corporate. I had a twenty minute call with the Marriott today. How this hotel stays in business is beyond me, as the list of issues is very long! Mind you I was juggling a conference, not to mention a nephrologist office who called me and wanted to see me tomorrow. 


VIDEO of Award Presentation (click on the second picture, below the bigger one):
https://www.icloud.com/photos/#0oz2yoCG7IM3Vv0KeEofvUaFA

Transcript of what I said:

I am Victoria Sardi-Brown, the President and co-founder of the Mattie Miracle Cancer Foundation. I am joined by my husband, Peter, who is the co-founder and CEO of Mattie Miracle. We are a Foundation that was born out of the tragic death of our only child, Mattie. Mattie taught us that psychosocial care must be part of comprehensive cancer care, and without it the medical treatment is not as effective. Mattie Miracle had the vision for the need to create Psychosocial Standards of Care and we are committed to not only funding their development but their implementation as well. Which is why we decided to partner with APOS and develop an early investigator research grant. 

As a Foundation, we could have hosted our own internal grant making process or perhaps even selected a different professional association to house this grant. But we selected APOS for many reasons. The most important of which is we consider APOS to be our professional association home. Peter and I are both members of APOS and decided to become members after hosting our first Psychosocial Standards Think Tank at your conference in 2013. Back then we had the honor of meeting your founder, Jimmie Holland, and getting to know your pediatric superstar, Dr. Lori Wiener. From Jimmie, Lori, and our countless interactions with APOS members it was clear to us then as it is to us now that you live out our Foundation’s tagline, and that is. ………. childhood cancer is NOT just about the medicine.  I can’t tell you how refreshing it is for parent advocates to be surrounded by professionals who understand us and the psychosocial language we speak. 

This year, APOS and Mattie Miracle embarked on new territory…. To fund research designed to implement any of the 15-evidence based Psychosocial Standards of Care which were published in Pediatric Blood & Cancer in 2015. 26 letters of intent were submitted to us and 12 were invited to submit full proposals. Proposals were reviewed by three experts in the area of the proposal, and they were evaluated based on scientific merit, innovation, significance to psychosocial oncology, and investigator qualifications. On a side note, Mattie Miracle was so impressed with the caliber of proposals received that the Foundation selected five additional studies to fund at a lower level, bringing the total to almost $40,000 in research grants made to APOS members this year. We welcome you to attend the Pediatric Psychosocial Standards Symposium tomorrow at 3:15pm to hear from all our grant awardees.

With that said, for the $10,000 Mattie Miracle Early Investigator grant, the research selection committee chose Dr. Kimberly Canter’s proposal entitled, Community Implementation of a Psychosocial e-health Intervention for parents of children with cancer. 

I have the pleasure of telling you a little bit about Dr. Canter. Dr. Canter is an Assistant Research Scientist II in the Nemours Center for Healthcare Delivery Science in Wilmington, Delaware and an Assistant Professor of Pediatrics at the Thomas Jefferson University. She completed a pediatric psychology residency in the Division of Behavioral Health and a two-year postdoctoral research fellowship at Nemours under the mentorship of Dr. Anne Kazak. 
The $10,000 grant we are providing to Dr. Canter will enable her to conduct a community centered pilot test of eSCCIP, in order to evaluate the intervention’s feasibility and key psychosocial outcomes. eSCCIP stands for Electronic Surviving Cancer Competently Intervention Program and is a brief, cognitive-behavioral and family systems eHealth intervention for parents and caregivers of children with cancer.   


We are thrilled that Dr. Canter is actively exploring ways to support parents and caregivers, because Mattie Miracle believes parents and caregivers are the unsung heroes throughout the childhood cancer journey. It is my honor to present the first Mattie Miracle Early Investigator Research Grant Award to Dr. Kimberly Canter.