Wednesday, July 13, 2011

Wednesday, July 13, 2011

Tonight's picture was taken in June of 2007 in Lancaster, PA. We took Mattie to a restaurant called Plain & Fancy, because we wanted him to experience Amish food. Mattie and I both got a kick out of the traditional dessert called Shoo-Fly Pie. This naturally intrigued Mattie because he wanted to know if the main ingredient was flies!!! Fortunately this gooey mixture of molasses, brown sugar, and spices only attracts flies.

Quote of the day: It's only when we truly know and understand that we have a limited time on earth -- and that we have no way of knowing when our time is up, we will then begin to live each day to the fullest, as if it was the only one we had. ~ Elisabeth Kubler-Ross

I find it absolutely fascinating that with the power of one's cell phone you can be connected instantly to people all over town and the world. Peter and I exchanged messages today and he is holding his own despite working incredibly long hours.

An amazingly scary storm hit the DC area this afternoon. I was out and not home. Since I learned to drive in California, I am very cautious about driving in torrential rains and forget about snow. So I actually waited out the storm in a restaurant for 30 minutes. I wasn't going out with the winds and lightning. While watching the rain, I wasn't alone electronically, I had Peter in Nigeria with me, Karen in New York City awaiting a report, Tina in Alexandria trying to figure out if I was in a safe place, and my 11 year old buddy, Katharina text messaging me. When I think about this, it is pretty amazing!

This evening Peter and I were invited to a Children's Cause for Cancer Advocacy (CCCA) event. CCCA is the leading national advocacy organization working to achieve access to less toxic and more effective pediatric cancer therapies; to expand resources for research and specialized care; and to address the unique needs and challenges of childhood cancer survivors and their families. CCCA leads efforts to ensure that these needs and perspectives of children with cancer are integrated into the highest deliberations on health care and cancer policy at the Federal level.

CCCA is very supportive of The Mattie Miracle Cancer Foundation and promotes our House Resolution on their website: http://www.childrenscause.org/

As I entered tonight's event, there was this very special tree filled with pictures of children battling cancer and those, like Mattie, who lost their battle. You can see Mattie's picture on the right side of the tree. This is one of my favorite hospital pictures of Mattie. He had just spent hours digging mock dinosaur bones out of clay and had assembled the dinosaur on the table (his hand is on top of it). It was a proud but tiring moment! To me this picture illustrates his beautiful eyes and his captivating nature.

At the event this evening, I met Marilyn. Marilyn's daughter was treated at Georgetown University Hospital, like Mattie. They weren't there at the same time. Marilyn's daughter (one of our FACES OF HOPE) was diagnosed when she was 11 and she is now 26 and is an art therapist working with children who have cancer. Marilyn was one of the first moms I met at Georgetown, since she runs a parent outreach program at the Hospital. I had met other parents of childhood cancer survivors during my tenure at Georgetown and unfortunately I was never in a good frame of mind to interact with them. To me they represented the unobtainable, I did not find their camaraderie helpful at all. No fault of their own, they were all sincere and delightful. But I understood the gravity of Mattie's condition from the beginning and hearing success stories only aggravated me.

Marilyn and I had a great conversation tonight and I look forward to working with her to enhance support services to families at the Hospital. In addition, while talking to Marilyn I learned more about the complexities of having a teenager battling cancer and especially the long term physical and EMOTIONAL effects that occur post treatment. I learned that many siblings of cancer patients are diagnosed with eating disorders. This is NOT at all surprising considering the fact that siblings feel powerless, NO control in their lives, and also are unable to get the attention and support from parents (who are focused upon the child with cancer) to help them learn to cope with stress and emotions. This is the perfect breeding ground for the development of an eating disorder. It also dawned on me that when a child or teen develops cancer, that developmental time period for them is lost. During each stage of development children/teens gain knowledge and life experiences. However, when struck with cancer patients are no longer learning and interacting with their peers, and therefore to some extent that growth opportunity is stunted.

I learned a lot in my interactions tonight and I find listening to cancer stories a very powerful and enlightening process. These stories further confirmed to me that my ideas for next year's Cancer Walk is right on target. Typically I do not work with Peter on a theme for the Walk until the fall, but this summer, an important idea for a theme has hit me.

When I came home from the event, I found that my front door key literally broke in the lock. I couldn't get inside and Patches was howling by the door. Fortunately since Peter and I have lived in our complex for 15 years, everyone knows us. I can't thank our front desk personnel enough for mobilizing forces to get the key out of my lock and locating another key to get me inside.