Sunday, September 16, 2018

Sunday, September 16, 2018

Tonight's picture was taken in September of 2003. Mattie was intrigued by fire trucks, or I should say trucks in general. Peter's parents gave Mattie this ride-on vehicle and Peter was out in our commons area showing Mattie how it worked. Mattie was cautious at first, but quickly got the hang of it. 

Quote of the day: Man’s greatest actions are performed in minor struggles. Life, misfortune, isolation, abandonment and poverty are battlefields which have their heroes - obscure heroes who are at times greater than illustrious heroes. ~ Victor Hugo

Peter and I went to Curefest on the National Mall in Washington, DC today. This is our fourth year setting up a booth for Mattie Miracle at this annual awareness event. 

What is upsetting about this event is that it doesn't reach the public.... people not exposed to the issues of childhood cancer. 

Nonetheless, the event attracts cancer advocates, childhood cancer patients, survivors, and bereaved parents from around the country and Canada. There are many advocates we love seeing every year and another highlight is meeting new families, hearing their stories, and discussing the importance of psychosocial support with them.

There were 80 foundations (each with their own tent) represented on the mall!

I snapped this memory wall! Rows and rows of children taken from us by cancer. Look at these beautiful faces. It reminds us that childhood cancer is not just about the medicine and it isn't so rare. Families are forever affected!

A close up of Mattie's tribute on the wall. 

At around 12:30, people began walking around the Mall. I tried to snap a few photos of the activity coming passed our tent. 

Walkers! You will find several families holding up signs, walkers holding photos of their children, people dressed with colorful outfits or catchy sayings on their clothing. 

Peter, me and Sunny at our Mattie Miracle booth. We got to the Mall at 8am, to start setting up, and left at around 2pm. 

Sunny was a huge hit. I can't tell you how many people came up to us and asked if they could meet and pet Sunny!

Peter and I were grateful to have Helen and Abbie helping us today. By having their help, it enabled us to truly talk to people coming into our tent. 

We gave away 80 t-shirts today, brochures, business cards and a ton of toys and gifts. 

Peter and Sunny with Vickie, the president of the Coalition of Childhood Cancer (CAC2, or which Mattie Miracle is a member of this organization). 

We were delighted to have our friends Margy and Ken with us under our tent. Margy ran a successful childhood cancer organization for 20 years, and I am honored that she values what we do and wants to bring attention to Mattie Miracle's mission. 

Margy worked with childhood cancer patients for many years and I can't tell you how many patients came into our tent to reconnect with her today. 

We are pictured with our friends Wendy and Gavin. They lost their only child too, so we understand each other well and we respect each other's foundations!

Peter with our Canadian friend and amazing advocate, Neal. Neal lost his son, Brendan, to cancer as well. 

Pictured with us is Joe. Joe runs a very successful childhood cancer foundation out of Delaware and is a wonderful and charming man. We bonded several years ago at Curefest, over the emotions of the day, and we have been friends every since. 

Our friend Margy, with Valerie. Valerie lost her brother to cancer and she comes to Curefest every year in his memory. She is a ray of sunshine. 

Peter with Annmarie, a fellow cancer advocate. 

This is Michaela. She is from Israel. In Israel she works with children who come from troubled homes. So she doesn't have experience with childhood cancer, but truly wanted to learn more. She really caught me off guard, because we need more Michaela's in attendance. She wanted to hear my story and about Mattie Miracle. After I told her, she hugged me, wanted to take a photo, and took my business card because she wants to stay connected. She has four children and couldn't imagine losing one of them. She felt I am amazing, a strong woman, and wanted me to know I am the mother to every family I help. 

I am pictured with Pam Wolters. Pam is a psychologist who works at NIH. She is the Co-Director, Behavioral Health Core, like our friend Lori (who works closely with Mattie Miracle). 










Though I did not take a photo of Linda (a mom) and her poster she was holding of her son, Charlie, I will never forget today's interaction. Linda lost Charlie to cancer only a few weeks ago, and yet found the strength to come to Curefest from Syracuse, NY. Linda purposefully came into our tent today to let me know she met me two years ago at Curefest. Two years ago, I met her and Charlie and I apparently told them about our Psychosocial Standards of Care. Charlie was so inspired by what he learned from me, that he took our brochures on the Standards back to his medical institution where he was seeking treatment and demanded that they provide psychosocial support to teenagers. Charlie worked on his providers for a year. At which point, psychosocial care was started. He's was amazing! Charlie is no longer alive, but Linda wanted me to know that Mattie Miracle's work matters. It affects change. As our Standards provide scientific evidence for the benefits of psychosocial care and it was the ammunition they needed to get Syracuse to do something to support its patients more effectively. This story will stay with me forever, because sometimes it is hard to see the tangible differences the Standards are beginning to make. The story of Charlie proves that we are on the right track. I feel that Charlie and Mattie Miracle produced a change in treatment for children in Syracuse. It doesn't get better than that.