Tonight's picture was taken on July 4, 2006. Mattie was 4 years old and we were invited out on the Potomac River with Mattie's close friend, Zachary, and his family. This was our first and only experience watching the Nation's fireworks from a boat. Mattie was thrilled, as Mattie always wanted a real boat of his own. So glad he had this experience.
Quote of the day: The conflict between the will to deny horrible events and the will to proclaim them aloud is the central dialectic of psychological trauma. ~ Judith Lewis Herman
As I mentioned in last night's blog, on Friday we went to visit a 9 year old boy, Ryken, at the National Institutes of Health in Bethesda, MD. Ryken basically hasn't known life without cancer, as he was diagnosed with Leukemia at the age of 4. He and his parents live in Canada. When I think of Canada, I think of a Country that is similar to the USA. But despite the fact that we share a border, our health care systems are quite different. I am not planning on having a 'political' conversation here about the advantages and disadvantages of socialized/universal medicine. As I know people have a range of opinions and feelings about this, yet after hearing this family's story, I can proudly say I am an American. Where I have the ability to decide and select my medical care and most importantly the care that Mattie received. 
It is hard enough having a child diagnosed with cancer. But can you imagine as a family turning to your health care system and finding inadequate care? How about your doctors NOT knowing about the most cutting edge treatment and research out there on your disease? Better yet, how would you like to be treated at a hospital that looks like a throw back to the 1970's? If I haven't made you pause yet, let's try this reality! As a parent, you do all sorts of research and discover alternative treatments for your child with cancer, but your government tells you that you are denied access to this care! Care that could be the only hope at saving your child? What I just wrote is the reality the family we met with yesterday faced in Canada. Which is why they are grateful to the USA and NIH (who is offering their child a clinical trial, which costs the family nothing to receive the medications). This family's story is harrowing and you should note that Ryken's cancer not only recurred, but his chemotherapy treatment caused him to develop a secondary cancer, non-hodgkin's lymphoma. I have attached a link below, if you wish to learn more about Ryken and his family! At the moment, I am on a mission to get connected to military members and local law enforcement. As Ryken has a dream of being such a public servant. Meeting these heroes of our society perks Ryken up and I am contacting everyone I know in hopes of getting police or military members to visit the family at NIH.
Ryken's Story:
https://calgaryherald.com/news/local-news/corbella-thousands-hoping-alberta-boy-arrests-his-cancer-with-experimental-treatment
Now how did yesterday's visit impact us? Well I would say, it left Peter and I in a funk. Each of us expressing it in a different way. Peter's funk can look sad and he will tell you he is depressed and my funk, is also internal. I am not so much sad, as I am absolutely numb and somewhat agitated. Thankfully we can talk about this with each other, of course not having solutions to this, but acknowledging that the visit has consequences. Not that we can contribute anything about the visit to how we feel, as we visited for about two hours and talked and listened to the family.
We were both cognizant NOT to talk about Mattie. The visit wasn't about us, it was about this family. I wish all the cancer families that visited us in the hospital when Mattie was ill, took this stance. I absolutely HATED hearing about their childhood cancer stories. I found NO comfort in hearing about the experiences of others, and I believe this was the case because we knew Mattie's prognosis was grim to begin with. Hearing people's survivorship stories simply aggravated me.
But what about yesterday put us in this funk? For me, as I was listening to the family and hearing what they are facing, I realized..... they are like us! There is little hope for this sweet and bright young boy. They have tried everything to hold back the disease. The trial at NIH is their last hope and resort. It is heartbreaking to understand this and we understand this unfortunately all too well. In a way, watching them was like looking in a mirror. Meaning in this case I was the observer, not the one living with the nightmare of childhood cancer. Yet I am not your average observer, because I know what it is like to see your vibrant child dying in your arms.
As tonight's quote points out..... dealing with trauma is complex and in a way never ending. Because to survive in our world, we have to place the medical traumas we experienced in a box. Yet through this blog and with each other, we do give trauma a voice. It is a constant internal conflict to manage the horrors we saw and the grief we continue to live with while navigating in a world that truly doesn't understand childhood cancer. So in a nutshell, we wouldn't have it any other way..... we are committed to helping families like ours, but we are also astutely aware of the fact that helping others expose us to similar traumas we experienced with Mattie.
