Tonight's picture was taken on August 5, 2014. This is a day I will never forget. On this day we learned that Mattie's cancer case was terminal. As we were waiting to for his CT scan appointment, we went out to the hospital rose garden. A place, I spent a lot of time, whenever I got to escape the pediatric floor for a few minutes to get fresh air. Which was rare. Near the garden was this elephant statue, which was covered in tiles and other ceramic art work. Mattie posed by the elephant because his nurse Kathleen created a tile for the elephant than featured a message to Mattie on it! She called Mattie her "monkey boy!" Mainly because Mattie's left leg was nicknamed 'Curious George.' The left leg was the only leg which wasn't operated on and therefore, George moved around almost like an arm. The left foot, practically was hand like, so skilled that Mattie could pick up, open, and do lots of things with his foot. In many ways, this photo was the last happy moment before we learned about his terminal status.
Quote of the day: In matters of truth and justice, there is no difference between large and small problems, for issues concerning the treatment of people are all the same. ~ Albert Einstein
I continue to be glued to my computer and am writing a book chapter! The parts I have researched and written already are currently being edited by the two researchers and clinicians who are working on the chapter with me. They are giving me comments and revisions which I have to address, but until they all come in, I am working on integrating Mattie's case into the book chapter. As such, I have introduced the reader to Mattie's overall case and then within each section am giving actual case examples that highlight the issues I am covering in the research. This may sound easy to do, but it truly isn't. If I had a lot of time, I probably could comb through the blog and find out exactly when each incident in Mattie's cancer journey happened and cite exactly how I wrote up the event when it happened. But I don't have that time. Instead, I have to rely on my mental data bank. Which fortunately is quite good. Thankfully I have had to present about Mattie's case at multiple conferences, medical grand rounds, and I write about Mattie so often. This keeps Mattie, our experience, and the lessons learned VERY fresh in my mind. As I sit and write this chapter, there are SO many examples I wish to highlight in this book chapter. But I am picking the most salient ones.
Tonight's picture, captures one of the salient examples I wrote about today in the section of the chapter about patient advocacy. There was a research study conducted on patient advocacy that assessed what forms of advocacy parents use when caring for their children. One form is called PERSISTING. That makes perfect sense to me and it was a strategy Peter and I used ALL the time, I just never put a name to it. If it wasn't for our persistence, Mattie would not have been diagnosed as terminal on August 5, 2009.
After Mattie completed 9 months of chemotherapy, three limb salvaging surgeries, and a sternotomy to remove 9 lung tumors, we thought his treatment was behind us. At that point, we focused on his rehabilitation and despite Mattie's weakened condition he participated in an intensive course of physical therapy. With the goal of trying to retrain him to walk, so he could potentially return to school in the fall of 2009. However, Mattie kept complaining of pain, he was unable to eat and couldn't even drink water. He survived on IV fluids alone! I kept bringing this to the attention of his doctors. Instead of listening to me, they felt that his not eating was a side effect of the chemotherapy, or his manipulation for control, or worse his addiction to pain medication. None of these explanations made sense to me and over time, as I saw Mattie not getting any better, I insisted that he be scanned. It was through a sonogram, followed by a CT scan that we learned Mattie's cancer spread to his liver and his lungs. Basically that his case was terminal. The lesson learned was that doctors have to listen to their patients and their family members. Sometimes cancer doesn't follow a road map, a scientific plan! Despite being off of chemotherapy for six weeks, and though it seemed impossible to them that his cancer could come back SO SOON, it did! With a vengeance. Meanwhile Mattie was suffering in enormous pain. I also wrote about the fact that before suggesting to parents that they are to blame and are being manipulated by their child, that doctors may want to rule out all physical possibilities for the symptoms mainly because what doctors say to parents can have devastating and life long consequences.
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