Thursday, March 1, 2012Tonight's picture was taken in August of 2002. Mattie was four months old. What I love about this picture is two things. First, Peter snapped this picture while I was playing with Mattie on the couch and what I can clearly see was Mattie staring directly at me. Not the camera and not at his toys. Second, from my perspective, Mattie looks just like a doll sitting in and amongst the toys. He had a precious face and cheeks as soft as a rose petal.
Quote of the day: For beautiful eyes, look for the good in others; for beautiful lips, speak only words of kindness; and for poise, walk with the knowledge that you are never alone. ~ Audrey Hepburn
I began my day with a conference call with the five psycho-oncologists who will be presenting at the Foundation's Symposium. I appreciate the opportunity to get to know these professionals and to hear about their research and their clinical experiences. Experiences which I can relate to after surviving Mattie's cancer battle. In a way, it is a very exciting time for the Foundation because in our own way we are doing something very novel and are charting new territory on Capitol Hill. The Hill is very used to hearing people beating the pavement about the need for funding medical research, but they are not used to professionals and parents coming before them to talk about the psychological and emotional experiences of cancer, its treatment, and its lasting side effects. This is where the Foundation's Symposium comes in and sheds a broader light on the day to day struggles and challenges of living with childhood cancer. The chemotherapy, radiation, and surgeries are really a small component of the treatment process. However, it is the impact of these treatments that have very tangible and day to day consequences on patients and their families. If you doubt this, just ask anyone who has experienced chemotherapy administered through a port or broviac. The infusion can take minutes to several hours, but the resultant ill feelings and lethargy can last for days! Such physical feelings can in turn produce very real psychological effects such as anger, sadness, fear, and shutting out the one's you love. In so many ways it is surviving the day to day battle that makes cancer so overwhelming and at times hopeless. Therefore, I am working hard on creating the best event possible and I am pleased with our registration numbers so far.
Our Symposium Scientific Chair, Dr. Anne Kazak, developed an online resource called the Health Care Toolbox, which guides children and families as they cope with illness and injuries. On the website today, Anne posted the following link, which I invite you to check out. The link discusses the Foundation's legislation and upcoming Symposium...........................
http://www.healthcaretoolbox.org/wordpress/?p=343
This afternoon, I was treated to a delightful lunch at the Ritz Carlton in Georgetown. The lunch was coordinated by Ellen, one of the Girl Scout troop leaders I have gotten to know. Ellen wanted to introduce me to two talented, energetic, and knowledgeable fundraisers and event coordinators at Georgetown University. It was a very fruitful conversation, which also gave me the opportunity to tell them about Mattie Miracle. The conclusion I have come to about running a non-profit is its success has a lot to do with having the right connections within the community and building a solid network of supporters who share our vision and passion for childhood cancer.
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