Sunday, September 22, 2019

Sunday, September 22, 2019

Tonight's picture was taken in October of 2007. To me this is the quintessential photo of Mattie. We took Mattie to Butler's Orchard in Maryland that day to pick pumpkins for the fall season. Something Mattie loved doing! He loved everything from the hay wagon ride to picking pumpkins in the patch. When I sometimes wonder why I go to Curefest on the National Mall each year, I think of Mattie and it always gets me up and motivated. Motivated to share his memory and for others to be aware of his legacy. 


Quote of the day: We understand death only after it has placed its hands on someone we love. ~ Anne L. de Stael

It was an early morning for all of us, as we got to the mall around 8am. We had a whole trunk full of Foundation items with us and Sunny in tow. Each September, the childhood cancer community unites on the National Mall to have an awareness walk, vendor tents, and a program of speakers and musical acts. The event is called Curefest. 

Since we have participated in this event over the last 6 years, I practically have the set up and the quantity of items we need down to a science. Nonetheless, I try to mix it up each year and offer different items as well as different information. The attendance at this event are families who have a child diagnosed with cancer, or a child who has survived cancer, or bereaved parents like Peter and me. People from all over the country attend. 

After we set up this morning, Sunny and I took a selfie! Sunny wasn't thrilled with me today, as it was VERY HOT and humid. We brought snacks and water for him, but after 5.5 hours there, he was ready to get in the air conditioned car. 

The stage at Curefest, with the monuments all around us. 

Our friends Margy and Ken joined us under our Mattie Miracle tent. Since Margy worked in the childhood cancer space as a play therapist as well as ran a childhood cancer non-profit for twenty years, there were many families who came by to visit with her. 

Do you see Mattie on the memory wall? I wish I could say this was the extent of the wall. But this wall of children who died went one for at least 100 feet. While in our tent, we faced this wall. I am not sure what upset me more...... that all these children died, or the life long aftermath of these deaths on the surviving families. 

One of our researchers, Bob Noll, attended Curefest this year. He surprised us. Bob has been on the journey of creating Psychosocial Standards of Care with us since 2012. 

I am pictured with Casey and Linda. Both moms lost a child to cancer. This is my third year meeting Linda. Linda lives in upstate NY. When I first met her, her teenage son, Charlie, was alive. Charlie came into our tent three years ago and was interested in our work on the Psychosocial Standards of Care. Charlie was a teenager in treatment and felt his hospital wasn't meeting his needs or that of his fellow patients. So literally he took our Standards brochure back to his institution. He told them.... 'here is the scientific evidence, NOW do something for me and the other kids.' Linda let me know today that the institution listened to Charlie and there is now a psychosocial program devoted to helping families throughout the cancer journey. Linda comes to visit me each year and updates me. She thanks us and Mattie, and of course, I thank her and Charlie. We can create something, but it was Charlie who operationalized it at his hospital. Amazing story, no?

Me with Miriam. Miriam sits on the board of Momcology, a national non-profit dedicated to meeting the supportive care needs of moms (whose children have cancer). We have gotten to know the leaders of Momcology and we look forward to figuring out next steps together on promoting the Standards within the advocacy community.