Thursday, September 20, 2012

Thursday, September 20, 2012

Tonight's picture was taken in March of 2009. For the past three nights, I have shared with you pictures of Mattie and Meg (one of Mattie's amazing Child Life Interns) during several physical therapy sessions. The sessions were held in the hallway of the pediatric units and the goal was to get Mattie up and out of his wheelchair in order to use his legs. That sounds much easier than it actually was. Mattie was a victim in so many ways of medical trauma, and like any child his age, children do not live in the future, they live in the here and now. Mattie was afraid to walk and very afraid of the pain and further injuring himself. As adults we may get that we need to work through the pain and participate in physical therapy for future gain, but a child doesn't think in these terms. Therefore to inspire Mattie to do physical therapy required major distraction. Not atypical for children who are hospitalized! Children, believe it or not, do not respond to chatting about a procedure or a process. Research hasn't been shown this to decrease anxiety for children undergoing procedures. Instead children relate to doing and being busy. Meg definitely fulfilled that role for Mattie. Her antics kept him engaged and distracted, so instead of focusing on fear and pain, his main goal was to beat Meg at a walking race. Mattie ALWAYS won each race, and at the end of the race, Meg would give him an Olympic medal. As you can see in this picture, Meg was acting worn out, Anna (Mattie's physical therapist in blue scrubs) was clapping and Mattie looked elated to have earned two medals.


Quote of the day: The camera is an instrument that teaches people to see without a camera. ~ Dorothea Lange


Tonight's picture, as do many of my pictures of Mattie, illustrate the day to day struggles of fighting cancer. Certainly the medical care and treatment Mattie received was vital, but surviving and living with cancer means MUCH MORE than medicine. In fact, I would go onto say that the medicine and treatment compound the problem. Many of the treatments are toxic and have horrific side effects, which children must cope with and try to recover from between rounds of chemotherapy. Treatments leave children extremely tired, sick to their stomachs, with a low immunity (which therefore usually leads to being isolated from people and crowds in order to avoid illness), looking different physically (bald, change in skin tone, perhaps disabled, etc), and having a host of mental health issues. But here is the thing, in the midst of battling cancer and these treatments, it is NOT medicine that helps one manage the day to day living! Or in some cases the day to day horrors. If you doubt what I am saying, just ask any parent who has or had a child with cancer. If you don't know someone like myself, then just ask any parent who has ever had to spend time in the hospital with a child. What gets you through the day to day are PSYCHOSOCIAL SUPPORTS! These supports may look different depending upon what hospital you are seeking treatment. In Mattie's case his psychosocial support came in the form of Child Life, Art Therapy, and Social Work. Knowing this, having faced this reality, the nature of today's Summit set me off. The psychosocial concerns and needs of children and their families must ALWAYS be integrated into any dialogue related to childhood cancer.

Today I attended the 3rd Annual Childhood Cancer Summit hosted by the Congressional Childhood Cancer Caucus. In the book I am currently reading, I came across Dorothea Lange's quote. To me this quote captures my feelings regarding today's Summit. Why? Well when Mattie was born I became obsessed with my camera. It came with me everywhere because I wanted to capture Mattie's every move. All I can say is thankfully I did this, otherwise, I wouldn't have these beautiful keepsakes now. However, my ability to see through a camera was perfected over seven years of Mattie's life, but the beauty of taking pictures is that eventually you learn the art of capturing a scene. In fact, you can capture it in your mind so well that the actual technology of a camera may no longer be needed. Lange's quote is basically saying that the camera can be an excellent teacher, teaching us to be observant and absorb that which is around us. I indeed absorbed everything around me today at this Summit. Perhaps I absorbed it too much!!!

One of the downfalls of being a person who absorbs a scene, is that I am good at assessing the nuances, the political aspects of things, and the agendas of others. Politics and agendas are all part of human nature, but I get quite disappointed when I see this behavior within the childhood cancer community. Today's Summit focused upon the pharmaceutical treatments of cancer and the Creating Hope Act that was signed by the President to give drug companies incentives for creating medicines to combat childhood cancer. This is wonderful in theory, but the problem is far greater than establishing incentives for drug companies. Childhood cancer is complex, there are so many different forms of the disease, and furthermore the number of pediatric patients available to test new drugs on is so small compared to our adult cancer population. Which is why creating new drugs for children is a daunting endeavor and explains why the majority of children are treated today with drugs which are 30 years old or older, drugs which were designed initially for adult use.

There were many other issues that arose for me in today's presentation which I am not going to discuss in detail, but I do have two comments. First, presenting childhood cancer in a theoretical and dry manner to me doesn't work, especially when you have people in the room deeply impacted by this disease. For us, we aren't talking theory, we are talking reality. Cancer changed our lives. In fact at the end of the session, I went up to one researcher and told him that the statistic he shared in which there is an 80% survival rate for childhood cancer brings me NO peace of mind. Especially since Mattie fell within the 20%. As a counselor educator by nature, I believe first and foremost it is crucial to know who your audience is!!!! The second issue that stunned me, is if you are going to acknowledge the names of a couple of children who died from cancer in the audience then identify ALL of them. I don't care if you mention our Foundation or not, but my child's loss is just as significant as anyone else's!

After this two hour ordeal, I can say that my highlight was connecting with my friend Annie. Annie and I met at least two years ago during a Curesearch event. We met during training and then lobbied together on the Hill. Annie lost her daughter Eloise to Rhabdomyosarcoma, about 8 months after Mattie's death. Annie does wonderful work to raise funds and awareness for childhood cancer, and I hold dear the gift she gave me about a year ago. She created beautiful tote bags that capture the spirit of Eloise. I call my bag, "an Eloise bag" and use it all the time, and though I did not know Eloise, I feel I know a part of her through her art work. The weather was beautiful today, and literally Annie and I ate outside on Capitol Hill and had a ton to chat about. Fortunately Annie was sitting next to me at the Summit because we had a debriefing with each other and I told her if she wasn't there for me to honestly talk to, I would most likely have left the event feeling guilty and determining something was wrong with me. But here is the thing, Annie and I are part of the club we did not ask to be a part of, and as club members, we unfortunately tend to interpret, absorb, and feel similar things. Before we left lunch, I had our waitress take a picture of us. What I "see" in this photo is appreciation and gratitude between friends and moms.