Wednesday, August 31, 2011Tonight's picture was taken in August of 2007 during one of Mattie's trips to San Diego. This was by far Mattie's favorite spot to visit in San Diego! As my readers know very well, LEGO was Mattie's toy of choice. However, LEGO is more than a toy, in a way it is a tool that helps children learn about space, physics, and mathematical properties. Mattie naturally gravitated to them and during his 15 months in the hospital, we literally built EVERY LEGO kit on the market. To this day, I still have Mattie's assembled Lego Taj Malhal in our living room. Mattie visited Legoland at least three times, and with each visit he was physically able to do more in the park. On his last adventure there he fell in love with their roller coasters and Mattie and Peter rode on them throughout the day! Since I am deathly afraid of roller coasters, I was simply in amazement over Mattie's courage and thrill for excitement. However, it wasn't until July of 2008, when Mattie was diagnosed with cancer did we learn the true strength of his courage and bravery.
Quote of the day: You give yourself permission to grieve by recognizing the need for grieving. Grieving is the natural way of working through the loss of a love. Grieving is not weakness nor absence of faith. Grieving is as natural as crying when you are hurt, sleeping when you are tired or sneezing when your nose itches. It is nature's way of healing a broken heart. ~ Doug Manning
I began my day by visiting Capitol Hill and the office of Representative Jackie Speier (D-CA). Rep. Speier is one of the 14 co-signers of HR 262, our psychosocial resolution that was introduced on May 13, 2011 by Rep. Chris Van Hollen (D-MD). The Resolution supports 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. For more information about the Resolution please click on: http://www.govtrack.us/congress/bill.xpd?bill=hr112-262
We met with Erin Ryan, Legislative Counsel to Jackie Speier, as well as Lauren Neff, Children's Cause for Cancer Advocacy's Director of Public Policy. Peter and I first met Lauren last March at CureSearch's Day on the Hill, and we have been connected to her ever since. We appreciate the opportunity to collaborate together legislatively as we try to make a difference in the quality of care children and families receive throughout their cancer battle. When I say throughout I literally mean from the time of diagnosis through survivorship.
It may shock you to know that in our era of modern medicine children with cancer are still treated with drugs from the 1950s, 1960s, and the 1970s. In 2004, the FDA approved, Clofarabine, a drug to treat leukemia. However, you should note that NO NEW DRUGS HAVE BEEN FDA APPROVED since the 1970s for children with cancer other than Clofarabine. As we know there are at least 12 different forms of childhood cancer, and clearly Clofarabine won't help each of them. In addition, because NO new drugs have been developed, physicians are left with no other options but to increase the dosage levels of these chemotherapy drugs to treat different forms of childhood cancers. However, such dosage increases have GREAT consequences. Around two thirds of all children who survive cancer treatment have some sort of long term effect. An effect that is a direct result of the toxicity of treatment. Such long term effects may include sterility, heart issues, neurocognitive issues, psychological issues, and secondary cancers. Therefore, surviving treatment and going into remission are wonderful, but that doesn't mean BY ANY CIRCUMSTANCE, that the child/teen can return to life as he/she lived it before. These children and teens need specialized medical care throughout their life journey to assure their health and well being. Unfortunately however, most children and teens do NOT have access to such services. Mainly because they DO NOT exist at most hospitals. So survivorship issues are the focus of Children's Cause for Cancer Advocacy (CCCA), and as our readers know, the psychological and social needs of children and their families with cancer is central to our mission. As you probably can connect the dots, survivorship issues and the psychological and social issues associated with childhood cancer are very interlinked, which is why Mattie Miracle is happy to be collaborating with CCCA.
Though I can advocate for a cause, I am not skilled or knowledgeable in the language of public policy. Which is why Mattie Miracle is lucky to have Brett Thompson from Mercury, LLC (a high stakes public strategy firm) behind us or perhaps on a day like today in FRONT OF US! Brett and his colleague Greg came to the meeting with me, and as usual provided us with solid input, guidance, and advice. It is hard to believe that our connection to Brett started over a case of his Pork Barrel BBQ Sauce. Some people meet over drinks or coffee, our relationship was established in a much spicier or tasty way!
This afternoon, I met up with Ann and her family. We all had lunch together and then we took a walk through town. In the midst of our conversations, Ann's cousin, Helen, told me that JP (Ann's cousin who visited our home a few weeks ago) left a note in one of Ann's notebooks. Helen found the note by happenstance, but basically JP wrote... Vicki Brown, a special life. Certainly that sentence is up for interpretation, but the way I interpret it is that he and I have a special connection with each other and he enjoys the time we spend together. I certainly wouldn't have felt any differently about JP if I didn't know about his notation, but I suppose why I am telling you this tonight is that hearing this statement made me feel appreciated and special. Regardless of who we are, we are all human and words of kindness and care are needed and are taken to heart.
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