Tonight's picture was taken in January of 2009. We were home from the hospital between treatments. This home time NEVER lasted long, because soon after a treatment Mattie would develop neutropenia. Meaning that his white blood cell (the cells that fight off diseases) count dropped dangerously low, and a high fever would usually ensue and back to the hospital we would go. As you can see one of Mattie's friends gave him this HUGE Scooby Doo balloon. Mattie was a big fan of Scooby and he truly enjoyed balloons, so this was a winning gift to him. What you can also see in this photo, were Legos. Mattie's toy of choice was always Legos and they were a God sent during cancer, because you don't need mobility to play, build, and create.
Quote of the day: The price of success is hard work, dedication to the job at hand, and the determination that whether we win or lose, we have applied the best of ourselves to the task at hand. ~ Vince Lombardi
As the day wore on today, I created the awards speech that will we give at the Roundtable when presenting these plaques. In case you wanted to read what we will be saying, the verbiage is below.
Congressman McCaul is serving his 6th term in the United Sates Congress representing Texas’ 10th Congressional district. Rep. McCaul is a childhood cancer champion as he is the co-chair of the Congressional Childhood Cancer Caucus, a Caucus which he founded in 2009 to more effectively direct congressional resources and efforts to the disease. The Caucus has focused its efforts on four priorities: pediatric cancer drug development, childhood cancer survivorship, psychosocial care for survivors and their families, and funding for state childhood cancer registries.
Congressman McCaul is the author of numerous pieces of legislation that address these challenges such as the McCaul-Butterfield Creating Hope Act, which provides market incentives to pharmaceutical companies to develop new drugs for children with rare pediatric diseases, such as childhood cancers and sickle cell.
But what some people may not know is that Rep. McCaul understands childhood cancer personally. He lost his best friend in elementary school to leukemia. I have a feeling that this personal loss guides his work as Co-chair of the Caucus. When we began working with Rep. McCaul’s office in 2010, the number one question always asked of us was….. can you show us the evidence and data for the importance and effectiveness of psychosocial care? So in essence, we credit Rep. McCaul for charging us with this daunting task and being the inspiration for us to develop these historic evidence based psychosocial standards of care.
Mattie Miracle is deeply grateful to Rep. McCaul for understanding that childhood cancer is not just about the medicine, and that providing psychosocial support to children and their families throughout the cancer trajectory is imperative for effective treatment outcomes and enhancing quality of life. Which is why Mattie Miracle is honored to bestow this Childhood Cancer Champion plaque to Rep. McCaul, as he continues to help us expand the message that psychosocial care must be a part of effective comprehensive cancer care.
Congresswoman Jackie Speier represents California’s 14th Congressional District. She is a tireless advocate for women’s rights, the public good, and the security of Americans. She was named to Newsweek’s list of 150 “Fearless Women” in the world.
Rep. Speier is no stranger to loss. She lost her first husband in a tragic accident in the 1980s, she lost a child in pregnancy, and on a mission to investigate human rights abuses in Guyana in the 1970s, was shot five times and waited 22 hours before help arrived. I feel this is important to know this personal history about Rep. Speier because she is the true representation of a survivor. Which is why it is no surprise to me that she is a strong and fierce advocate of survivorship issues for children with cancer. In June 2015, Rep. Speier joined the other childhood cancer caucus co-chairs and introduced the STAR Act which addresses four major concerns facing the childhood cancer community: Survivorship, Treatment, Access, and Research.
Rep. Speier understands that the cancer fight does not end with remission. Since as many as two-thirds of childhood cancer survivors experience secondary cancers and other late effects that impact their quality of life. Mattie Miracle started working with Rep. Speier’s office in 2011, when we encouraged her to add psychosocial language to her survivorship bill. Rep. Speier not only understood and valued our insights but incorporated them into her Bill, which then became a part of the STAR Act.
Mattie Miracle is deeply grateful to Rep. Speier for her advocacy and commitment to childhood cancer survivors and her understanding that psychosocial care is imperative and just as important as the medical care. Which is why Mattie Miracle is honored to bestow this Childhood Cancer Champion plaque to Rep. Speier, as she continues to help us expand the message that psychosocial care must be a part of effective comprehensive cancer care.
Senator Chris Van Hollen was elected to the senate by the people of Maryland in November of 2016. However, prior to this Congressman Van Hollen served 14 years as the U.S. Representative for Maryland's 8th congressional district.
Senator Van Hollen is a tireless advocate for thousands of children, adolescents, and young adults diagnosed with childhood cancer and their families. He co-authored the landmark Caroline Pryce Walker Conquer Childhood Cancer Act and played an integral role in its enactment into law in 2008. Congressman Van Hollen, whose district includes the National Institutes of Health (NIH), has been a leader in the charge for federal investment in biomedical research that will lead to new, improved treatments and hopefully a cure for childhood cancer.
In 2010, we began working with Congressman Van Hollen’s office and described the necessity of having access to psychosocial care for children with cancer, the importance of this care alongside the medicine, and our desire to spread this awareness. Congressman Van Hollen heard us loud and clear, and as a result, in 2011, he and Congressman McCaul (R-TX) introduced H.Res. 262, which was a resolution to Support efforts to raise awareness, improve education, and encourage research and treatment of the psychosocial needs of children diagnosed with childhood cancer.
Mattie Miracle is deeply grateful to Senator Van Hollen for giving psychosocial care for children with cancer a voice on Capitol Hill and understanding that this care is just as important as the medicine. Which is why Mattie Miracle is honored to bestow this Childhood Cancer Champion plaque to Senator Van Hollen, as he continues to help us expand the message that psychosocial care must be a part of effective comprehensive cancer care.
1 comment:
Vicki, I am overwhelmed by all that I read in this blog. I wonder how many people realize and recognize what strides the Mattie Miracle Foundation has already made. Nothing as big & important as the implementation of Psychosocial Standards happens overnight. Every single word, I read, reinforces my belief that a day will come, in the not so distant future, that these standards will be part of the care of children diagnosed with Cancer. Thank you Mattie Miracle - Vicki & Peter Brown for your tireless effort. I feel certain Mattie is so proud and feels your forever love!
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