Tonight's picture was taken in March of 2008. Mattie came home from school that day and wanted to fly a kite. Not necessarily kite season, but that did not stop him. Our commons area was the perfect place to learn to fly a kite, because there is always a breeze throughout the seasons.
Quote of the day: As to diseases, make a habit of two things — to help, or at least, to do no harm. ~ Hippocrates
The father of medicine's quote tonight is very telling.... to do no harm. Yet I would say that medicine in some cases is doing more harm than good, particularly when it comes to meeting the holistic needs of patients and their families. We maybe living in the 21st century, but the attention to psychosocial care from physicians is minimal at best. If it exists at all. So many reasons can explain the why these human qualities are lacking in our doctors.
First I think the human factor gets trained out of doctors in school. Being humanistic is not rewarded and in some cases I even saw it chastised within the hospital setting. Which confuses me, because how a doctor thinks he/she will get anywhere with a child patient without displaying human qualities is simply beyond me. I also blame insurance companies for regulating the art of care, and any one who has ever had to see a doctor knows that you have very limited face to face time. For doctors' offices there is no incentive to providing quality care, when insurance companies demand quantity of patients seen.
It isn't surprising given the nature of some medical treatments, that patients may develop medical traumatic stress. In fact, after Mattie's second limb salvaging surgery, I noticed something wasn't right with him. He was only three months into treatment, but behaved like someone who just gotten back from a war. The PTSD symptoms were very similar. As Mattie was highly agitated, startled at noises, did not want to be touched, had bad nightmares and couldn't sleep and the list went on. Of course when I brought these issues up to his medical team, they told me it was most likely a reaction to pain medication. I DON'T THINK SO, and fortunately I kept advocating and demanding to see a psychiatrist. No one ever used the terminology medical traumatic stress with me, instead I had to learn it by doing my own research. While also caring for Mattie 24/7.
Yet what about parents? What happens to us after witnessing such medical traumas with our children? After all with Mattie there were daily traumas, not just the trauma of diagnosis. Well thanks to people like Anne Kazak and other researchers in the field of psycho-oncology, it is now well understood that parents of children with cancer develop medical traumatic stress. Unfortunately I am living proof that the experience I had with Mattie has permanently impacted me. I have been transformed into a much more anxious individual.
After Mattie died, I began doing research on childhood cancer and trauma. I kept seeing journal articles pop up on my screen and many of them were written by Dr. Anne Kazak. So in the fall of 2010, a year after Mattie died, I wrote Anne an email. Never thinking she would respond. But she did! Needless to say, something I must have said caught her attention and we kept dialoguing for about two years. Until Peter and I asked her to serve as the scientific chair of the first ever childhood cancer psychosocial symposium on Capitol Hill. Anne agreed and we have been connected ever since. In fact, Anne is part of our core team who created the evidence based psychosocial standards of care.
My friend Debbie, sent me the article link below. Within the article Anne is mentioned as is medical traumatic stress. Just so we are all on the same page,
medically traumatic stress is a growing area of research in the field of post-traumatic stress disorder, or PTSD. For parents, a child’s single medical event or an ongoing medical condition—such as cancer, severe injuries, Type 1 diabetes, epilepsy, or other neurological disorders—can cause post-traumatic stress. Symptoms may include reliving the experience, avoiding reminders of the event or condition, feeling numb or detached from others, anxiety, difficulty
concentrating and being constantly on the lookout for danger.
Check out the article for yourself. But honestly if it weren't for Anne's research, I would have thought something was very wrong with me. However, after significant reading, I know that how I feel, think, and respond to certain situations can all be linked to the 14 months of watching Mattie endure cancer treatment and then die a horrific death in front of us. It is NO WONDER why I need valium yesterday to manage through a medical procedure. I know it, other parents who have experienced traumas with their children know it, so why can't our medical system seem to understand that patients come to them with previous medical traumas??????????????
For Parents of Ill Children, a Growing Recognition of PTSD:
https://www.wsj.com/articles/for-parents-of-ill-children-a-growing-recognition-of-ptsd-11550577600?shareToken=st605b167335f0498f89295136ab4a351b&ref=article_email_share
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