Tonight's picture was taken in March of 2003. Mattie was almost a year old and in one of his favorite modes of transportation...... on Peter's back! We took Mattie to the US Botanical Gardens. Which was a wonderful space to visit, especially in the cold weather months, because it was always so warm inside and tropical. It felt like a short visit to Florida. What I love about this photo was Peter had no idea what was going on behind him. He was focused straight ahead and Mattie was focused on me. I had no idea a photo was even being taken!
Quote of the day: There are two ways of meeting difficulties. You alter the difficulties or you alter yourself to meet them. ~ Phyllis Bottome
For the past week or so, Peter and I have been working to complete an application for Mattie Miracle to qualify to become a member of a national coalition of cancer organizations. I am sure you can relate to my sentiments as I write this, because we have all had to apply for something in our lives. Whether it be school, a job, a scholarship, a loan, etc.... Whenever you apply for something, you want to assess yourself, evaluate what you have accomplished, and hopefully when doing all of this you can make a case that you qualify for whatever you are applying for. This can be a stressful process in a way but in the end, when you sit back and look at the finished product, it really is wonderful to see the results.
While working on this application for the past week, quite intensely, I wasn't sure at times I would ever finish, could get the words out succinctly, and capture all we have done in the last five years. However, now that I read through all that we have done on both the local and national levels, I would say it is remarkable. It is remarkable because we do not have a staff, no full time employees, and our operating budget is not significant. Yet here are some of the things we have done:
National Accomplishments:
1) May 10,
2011 - H. Res. 262 (Legislative)
Mattie Miracle began advocating on the Hill in
2010, for psychosocial awareness, support, and care. From those efforts H. Res. 262 was created,
which was designed to support efforts to raise awareness, improve education,
and encourage research and treatment of the psychosocial needs of children,
adolescents, and young adults diagnosed with a childhood cancer and their
families. Sponsored by Chris Van Hollen (D-MD) with 22 co-sponsors.
2) September
22, 2011 - Childhood Cancer Survivors’ Quality of Life Act of 2011/2013
Mattie Miracle collaborated with Children's Cause for Cancer
Advocacy and integrated psychosocial language into the Survivors' Quality of
Life Act in 2011 (HR 3015). This psychosocial language remains in the Bill and
was reintroduced on May 20, 2013, H.R. 2058: Childhood Cancer Survivors’
Quality of Life Act of 2013, sponsored by Jackie Speier (D-CA) with 31
co-sponsors. The insertion of psychosocial language would regulate the
establishment of a center of psychosocial excellence, fund psychosocial outcome
research, as well as long-term integrated medical-psychosocial follow up care
for survivors.
3) March 20,
2012 - Childhood Cancer Psychosocial Symposium on Capitol Hill
Mattie Miracle hosted the first ever Childhood Cancer Psychosocial
Symposium on Capitol Hill. A room within
the Capitol Hill Visitor Center was filled to capacity representing 12
different states across the country. Our
registrants were comprised of nurses, social workers, professional counselors,
child life specialists, art therapists, occupational therapists, psychologists,
medical doctors, and childhood cancer advocates, and leaders. Professional attendees received continued
education units for the eight hour event.
Capitol Hill staffers were present, and four Congressional Members (Rep.
McCaul (R-TX), Rep. Van Hollen (D-MD), Rep. Speier (D-CA), and Sen. Reed
(D-RI)) spoke and received outstanding legislation awards. The symposium was moderated by a
distinguished panel of psychosocial scientists and clinicians who conducted a
congressional briefing and then delved into the cutting edge research. This was
followed by a panel discussion in which the personal stories and insights from
six parents touched by childhood cancer were shared with the audience. It was at the Symposium that Mattie Miracle
shared its vision for a National Standard for Psychosocial Care.
4) February
14, 2013 - First Childhood Cancer Psychosocial Think Tank
Mattie Miracle hosted an Historic Multidisciplinary
Childhood Cancer Psychosocial Think Tank at the 10th Annual American
Psychosocial Oncology Society Conference in Huntington Beach, CA. The purpose of the think tank was to bring
together psycho-oncology leaders (representing the fields of psychology,
psychiatry, social work, nursing, and counseling) and brainstorm how to create
and implement a pediatric psychosocial standard of care. Currently, there are no U.S. standards of
care for these critical services.
Standards of care define the minimum types of psychosocial services
which should be available to children with cancer and their family members, no
matter where in the U.S. they receive cancer care. Standards should cover care for patients,
siblings, parents, long-term survivors and families grieving the death of a
child from cancer. The day-long think
tank was extremely productive and as a result four working groups were
created. These groups have monthly
conference calls and periodically meet in order to further our goal. As a result of this think tank, the American
Psychosocial Oncology Society awarded Mattie Miracle with the Distinguished
Public Service Award of 2013 at the conference.
5) February
13, 2014 - Second Childhood Cancer Psychosocial Think Tank
After the first think tank there were monthly conference
calls with each of the working groups to review the clinical literature to
ensure that the Standards generated were evidence-based. A consensus-based approach was used to
determine whether enough evidence was available for the standard to remain
essential. Mattie Miracle hosted a
second multidisciplinary think tank at the 11th Annual American Psychosocial
Oncology Society Conference in Tampa, FL.
The purpose of this think tank was to refine the Standards and to come
to professional consensus. At the second
think tank small working groups reviewed the created Standards, evidence
summaries, and rating forms as well as conducted additional reviews of specific
portions of the Standards.
Local Accomplishments:
Created and endow the Mattie Miracle Child Life Program Fund
at MedStar Georgetown University Hospital.
Since 2011, have contributed over $100,000 to this fund. The fund supports psychosocial services
through the creation of a child life position, a position which assists 3,500
children and families each year. Mattie
Miracle received the MedStar Georgetown University Hospital's Special
Recognition Award in 2011 and the Flame of Hope Award in 2014 in recognition of
our contributions to the Hospital and the childhood cancer community.
Mattie Miracle is a founding member and now the main
contributor of the MedStar Georgetown University Hospital free snack/item
cart. This cart revolves around the
in-patient pediatric units and offers free snacks and toiletry items to parents
and caregivers of inpatient children who are unable to leave the units and get
their basic needs met while caring for their children.
The Foundation runs two successful item drives within the
community every year to stock the free snack/item cart. This year we collected 4000 pounds of post Halloween
candy which was distributed to 5 local hospitals and 5 cancer organizations,
such as Ronald McDonald Houses. On
average, we donate over $10,000 worth of items to the MedStar Georgetown
University Hospital cart per year. Fox 5
DC covered our candy drive in 2013.
For the past three years, Mattie Miracle has funded a
monthly pediatric nurse support group luncheon at the MedStar Georgetown
University Hospital. Nurses are on the
front line of managing many of the day to day issues that their pediatric
patients and families with cancer are experiencing. We are committed to helping meet the
psychosocial needs of nurses so that they may continue to provide the highest
quality care to their patients and families.
Each May, Mattie Miracle sponsors an Awareness Walk &
Family Festival in Alexandria, VA. On
average 500 people from the Washington, DC, Maryland, and Virginia area attend,
in order to raise awareness about childhood cancer and funds for the Foundation.
Happenings for this year:
1) March 2015 - National Comprehensive Cancer Network (NCCN)
Annual Conference Poster Session
Mattie Miracle will attend the NCCN's 2015 annual conference in Hollywood, FL and present a formally accepted research poster on "Establishing
Psychosocial Standards of Care for Childhood Cancer." The poster will
describe the history of the project, the methodology of how the Standards were
created, and the results of the project to date.
2) 2015 Springer Publications
Sardi-Brown, V., Kupst, M. J., Brown, P. J., Wiener,
L. (in press). Psychosocial issues
in children with cancer: The role of patient advocacy and its impact on care.
In R. M. Henshaw (Ed.), Sarcoma: A Multidisciplinary Approach to
Treatment, Heidelberg: Springer.
Sardi-Brown, V., & Brown, P. J. (in press). Parents'
perspective on the role of psychosocial care: Conversations and approaches. In
A. Abrams, A. Muriel, & L. Wiener (Eds.), Pediatric Psychosocial Oncology:
Textbook for Multi-disciplinary Care. Springer.
3) July 2015 - Symposium at 2015 World Congress of
Psycho-Oncology (IPOS/APOS)
Mattie Miracle will sponsor a Symposium at the International
Psycho-Oncology Society and the American Psychosocial Oncology Society's World
Congress in Washington, DC. Co-Founders will present the history behind the
Standards for Psychosocial Care project, provide a summary of the current
status of the project, and discuss hopes for implementation. The project's
research and clinical leaders will describe the process used to develop the
current recommended Standards, including: how the literature reviews were
conducted, consensus calls, and the appraisal of the existing supporting
literature. Each of the Standards will be presented along with a summary of the
evidence found.
4) Fall 2015 - Supplemental Issue of Pediatric Blood and Cancer
Mattie Miracle is funding an on-line supplemental issue of
Pediatric Blood and Cancer devoted to the "Standards for Psychosocial Care
of Children with Cancer and their Families." This work will describe the
process used to develop the Standards, which will then be followed by a series
of 14 brief papers that will provide detailed information on each standard,
including tables of evidence and approaches to address barriers to
implementation.
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