Tonight's picture was taken in May of 2009, in Mattie's hospital room. Mattie loved colored tape, an attraction which started in preschool. In fact, during his first year in preschool, I understand that in one semester, Mattie used up the school's year supply of tape. That is how much he LOVED tape! I am trying to recall this picture tonight, and I do not remember the exact context, other than Mattie got Linda, his Child Life Specialist to sit in a chair and he was taping her up. As silly as this may look, this was actually great physical exercise and therapy for Mattie. He had to move his arms, legs, and use his hands!
FOX 5 Interview
Quote of the day: There are two primary choices in life; to accept conditions as they exist, or accept the responsibility for changing them. ~ Denis Waitley
Somehow tonight's quote speaks to me. It perfectly captures the sentiments of today and the interview with Fox 5 at Georgetown University Hospital. Peter and I take responsibility for changing the psychosocial care of children and their families battling childhood cancer. This is a huge undertaking, but we have to start somewhere, and Georgetown is where we are beginning. I want to commend Beth Parker, a newscaster at Fox 5, for telling our story, highlighting the work of the Foundation, and announcing our Walk next Sunday.
After our 2011 Foundation Walk, we contributed $25,000 to Georgetown University Hospital, which endowed the Mattie Miracle Child Life Program Fund. This Fund is used to pay Jess Abrams' salary. Jess is a Child Life Specialist at Georgetown who specializes in normalizing, supporting, and educating children and their families on scan and procedure days. These are very stressful days at the hospital, because it is through these scans that one determines whether treatment is working, or whether cancer is progressing. Fortunately for us, while Mattie was battling cancer, Linda (Mattie's Child Life Specialist) accompanied us on every scan and procedure. Mattie and I couldn't have made it without Linda's support. Which is why we knew funding a Child Life Specialist to work under Linda's guidance on scan and procedure days would be beneficial and a great addition for the Hospital. I understood that, but today, I got to see how BEAUTIFULLY our vision is working out!
Each year around the time of the Walk, we reconnect with Marianne Worley, the Director of Media Relations at Georgetown University Hospital. Marianne has strategized with us in the past about the Foundation and is another one of our champions at the Hospital. Marianne made this interview happen today and connected us with Beth Parker. In fact, Marianne introduced us to Beth Parker in May of 2010, when she covered our first Foundation Walk and our keynote speaker, Sean Swarner. We are deeply grateful to Marianne and it is thanks to her that I got to see for myself the amazing work Jess is doing and how our money is truly going to support the psychosocial needs and concerns of children with cancer.
Today's Fox 5 story featured Alesia, a nine year old girl battling Hotchkins Lymphoma. It is through Alesia's story, that one can feel great pride in what the Mattie Miracle Cancer Foundation has been able to accomplish. Alesia was born in Russia and lived in an orphanage. She was diagnosed with cancer while in the orphanage and her first two rounds of chemotherapy occurred in Russia. Alesia's treatment was inhumane. She was told that she was RESPONSIBLE for getting cancer and was being punished. If that wasn't awful enough to do to a child, she was then strapped down to her bed for each chemotherapy infusion. She was told that she was being administered water through an IV, not medicine. Alesia was never told she had cancer and she had no idea why she was feeling so ill and losing her hair. Alesia underwent treatment alone, had no support, and her orphanage was three hours away from the hospital. Cancer treatment is daunting enough, but the way Alesia was treated makes you feel sick to your stomach.
Through a Bridges for Hope program, an American couple had an opportunity to meet Alesia in the US. They fell in love with her and began filling out paperwork for her adoption. Thankfully so! While filling out the paperwork they learned of Alesia's cancer diagnosis and the orphanage and adoption agencies assumed this family would back away from their commitment and not want to take on such a medical responsibility. However, as Larry (her adopted dad) told us, it did not matter what Alesia was diagnosed with, he and his wife loved her and wanted her in the States. Larry and his wife embody the whole premise of tonight's quote. They took incredible responsibility for changing things for the better for Alesia.
When Alesia first came to Georgetown Hospital, she entered the building and clinic screaming. She was scared and frightened. After all from her previous experiences she learned that doctors and nurses can't be trusted and they do harmful things. Then Alesia met Dr. Aziza Shad and her team, and things began to change in the positive direction. If you could see Alesia today, you would NEVER know that this is a young girl who lived through such trauma, torture, and fear. She appears to be happy, well adjusted, and engaging (even on chemotherapy!). This is a strong testament to the work, support, and relationship Alesia developed with Jess. In fact, Larry even admits on the Fox 5 newscast that Jess is an important part of Alesia's world, Alesia "trusts Jess." Trust is crucial for any child, but especially a child enduring cancer treatment. When I sat back and observed this story unfold today, all I could say is WOW! This is what we are actually helping to accomplish!!! We are transforming a life, and Alesia is just one example of who Jess is helping in a given week. I would never have known the full extent of our contribution if I hadn't seen it for my own two eyes. The beauty of Alesia will remain in my mind always.
Coming to Georgetown is like visiting one's home, and we feel this way because of the people within the building, not the building itself. When we entered the Hospital today, I told Peter that I have missed seeing Jey. Jey worked in the CT area and also helped to transport Mattie. Jey became part of our family and would visit Mattie each week in the Hospital. In fact, when Mattie died, Jey remained by his side. Jey insisted he go with the nurses and accompany them as they brought Mattie's body to the morgue. This is the kind of bonds we developed there. After Mattie died, Jey couldn't work in the CT department anymore, and transferred to the Hospital's security force. Mattie had a profound impact on those who got to know him, and it is through Mattie, and in his spirit that amazing work continues to be done. If I should ever forget this, my new code word will be Alesia! This will automatically reset my mood.
Info about Beth Parker:
Beth Parker's written story: