Thursday, January 19, 2017

Thursday, January 19, 2017

Tonight's picture was taken in January of 2006. We were in Mattie's preschool class, and next to Mattie was his teacher, Margaret. Margaret was an outstanding preschool teacher and we loved her so much that we became instantaneous friends. It is hard to believe that both Mattie and Margaret are now dead. The activity you see in this photo, was something I decided to do. I wanted to have the kids decorate gingerbread houses. Margaret loved the idea and gave me her gingerbread house cookie molds to use. What Margaret did not know at the time was I NEVER HAD baked a house and assembled it myself from scratch before. So when I say this was a labor of love, I AM NOT kidding. They are much harder to put together than you think. I made the dough myself and the royal icing. I made two houses and the kids had an incredibly fun time decorating. So much so that other classrooms came in to participate! 

The finished products!
















Quote of the day: Stress is the trash of modern life-we all generate it but if you don't dispose of it properly, it will pile up and overtake your life. ~  Danzae Pace

Peter and I presented today with two of our researchers at the National Institutes of Health in Bethesda, MD. The NIH has trainings for pediatric oncology personnel every Thursday, and though the typical focus is ON THE MEDICINE, they invited us in to talk about the psychosocial standards of care and why they were important to establish. I led off the presentation with our story and why Mattie is our inspiration for changing the nature of psychosocial care and for the creation of the Mattie Miracle Cancer Foundation. 

I explained to the audience my love for photographing Mattie. I basically have an extensive photo documentation of ALL of his seven years, and I believe it is important to others to see these photos to help put our loss into context. I introduced this slide by saying that the if we factored in how much time a child spends receiving medical treatment and compared it to the inordinate amount of time a child and family manages the side effects of the medical treatment, then what one quickly surmises is that CHILDHOOD CANCER IS NOT JUST ABOUT THE MEDICINE. The medical treatment transforms children physical, social, emotionally, and cognitively and many times children are aware of their differences and aren't happy about it. Therefore psychosocial care is just as important as the medical care and I went one step further to say that without psychosocial care the medicine won't be as effective. Which is bold in a room of medical researchers!!! I gave them three examples of how understanding a child psychosocially can help with medical treatment and outcome. 

I explained that Mattie had sensory processing issues before his cancer diagnosis. As such he did not like tight spaces, loud noises and people in his space. In the lower right hand corner photo you see Mattie with his hands over his ears because he did not like the overwhelming sounds in the clinic. It would have been helpful if Mattie's treatment team understood and respected his sensory issues and planned accordingly in his treatment plan, but they didn't. Instead they insisted that Mattie could manage MRI's without sedation. Mattie attempted MRI's without sedation unsuccessfully EVERY TIME and the by-product was delayed scanning, and delayed scanning means delayed start of treatment. When dealing with cancer, you really want NO delays in treatment ----nothing that can cause cancer cells to continue growing and taking over. In addition, Mattie's bad experiences in scans made all successive scans impossible to do without sedation. Of course sedation comes with a risk every time you use it. So the moral of the story is spend the time understanding the psychosocial issues of a child. If that had happened in Mattie's case, scanning would have gone smoother, with less anxiety and more timely completions of the process. 

I love this slide because to me it captures the nature of childhood cancer perfectly. It isn't pretty and so much of what is unbearable has nothing to do with the actual chemotherapy infusions. But it is the aftermath of these treatments that produce psychosocial consequences on both the child and the family. Consequences such as depression, anxiety, pain, exhaustion, etc! None of these issues have quick fixes and instead I would beg to argue that these psychosocial issues become ingrained and permanently a part of one's body, mind, and spirit forever. 

Yet when you get to our psychosocial slide, look at how the tone changes. Mattie was smiling. Not that he wasn't contending with cancer, he was, but these diversions and activities were all extremely positive and gave him to the opportunity to be a child again. 

As the research indicates psychosocial care mitigates symptoms, pain, and fatigue and also helps children adhere to their medical treatments. The research is the research, but we are living proof of what these research findings are illustrating. Psychosocial care does improve one's quality of life, outlook on life, and I have to believe if your mood is stable you (patient and caregiver), you are in a better position to care for your physical health. 

Meanwhile as of this afternoon, DC is moving to a lock down status for the inauguration. This is a first for DC, because I have never seen such heightened security. It is almost daunting to be on the street. Concrete Jersey barriers are everywhere around me and our street is closed off to vehicular traffic and on some of our streets we are NOT allowed to walk on them either. 

This evening, I started hearing explosions. I have to admit I got terribly frightened and Sunny began to hide. Yet I could see fireworks through the reflection of glass on the high rises around me. Peter was able to capture some of the fireworks from our complex. 

These fireworks seeme louder than the fourth of July! I have no idea why. Maybe because I wasn't prepared for them, but the photographs are stunning. 

Last one!