Tonight's picture was taken in August of 2008. Mattie had just begun chemotherapy (no surgeries occurred yet) at that point and therefore still had his hair and was still able to walk and use his arms. We really had no idea the horror that awaited us, which was probably a good thing. Since you can only handle horror and trauma in small dosages. Pictured with Mattie were his amazing art therapists, Jessie (on the left) and Jenny (on the right). Neither one of these ladies are at Georgetown Hospital anymore, but thank goodness for us they were there when Mattie was battling cancer. As you can see they knew exactly how to stimulate Mattie's creativity and they were not only therapeutic for Mattie, they were essential for me. Mattie had an amazing support team at Georgetown, comprised of Linda (Mattie's Child Life Specialist) and Jenny and Jessie. None of them had children at the time (which they do now!) and yet they understood the complexities of Mattie's diagnosis, the stresses, the fear, and the need for support that we all needed on a daily basis. A threesome never to be forgotten.
Quote of the day: In these moments I understand that whatever idea one has that one has control over one's children's lives or one's own life or their collective futures is transient at best and absent at worst. ~ Dr. Mark Greenberg
As my faithful blog readers know, I have become connected to a mom who lost her only child to cancer in June. Since our connection, we reach out to each other daily in some shape or form. My "friend in cancer" sent me an email while I was in Europe filled with some very meaningful links. One of the links that I will write about tomorrow truly resonated with me. Since I mark Mattie's loss by the number of Tuesday's (the day of the week Mattie died) that pass, I figured talking about the impact of cancer on my life through referencing this article should appropriately happen tomorrow.
One of the other links my friend sent me was an 18 minute long YouTube video featuring Dr. Mark Greenberg. Dr. Greenberg is the Chief of Oncology at The Hospital for Sick Children, and for a decade co-chaired the national Canadian Childhood Cancer Surveillance and Control Program. Today, Dr. Greenberg is a senior advisor and past medical director of the Pediatric Oncology Group of Ontario (POGO).
I attached the link to the video below in case you would like to see it for yourself. To be honest, I watched the video three times because I wanted to capture the essence of what he was saying and to write down several things word for word. Dr. Greenberg is not only an oncologist but he lost a child to cancer. As he humbly lets his audience know is that in some circumstances he can neither cure nor heal. I like his honesty, because that is indeed correct! Doctors aren't God, though some do have a very high opinion of themselves. The insights from Dr. Greenberg resonated with me because here is a doctor who acknowledges that cancer treatment is NOT just about the biology of the disease. As I always say, cancer is much much more than the chemotherapy, the radiation, the surgeries, and immunotherapy treatments!!! A small percent of doctors (emphasis on SMALL) understand this, but I suspect Dr. Greenberg learned this poignant lesson in a very harsh manner. Through the diagnosis and loss of his child to cancer.
Dr. Greenberg stated, "childhood cancer is not a disease of cells, genes, proteins, arms, legs, blood, bone, and brains. It is all of those, but it is a disease of mothers, fathers, sisters, brothers, grandparents, and the extended society in which they live. When cancer intrudes on your home its impact never goes away." Absolutely and his psychosocial approach to medicine comes shining through in just 18 quick minutes!
In fact, he goes on to say that the impact doesn't go away whether the child lives or dies and I believe from my own personal experience this is very correct. In his video clip he discusses the issues that arise with a life threatening illness. The psychological impact of having to make life and death decisions about your child's cancer care is daunting! As Greenberg aptly points out and I apply it to our case, when Mattie was getting treated, I did not just make one life or death decision, I was making them DAILY. Some days hour by hour. I can't tell you the type of stress and havoc that can put upon a human being both physically and mentally. Which may be why Dr. Greenberg stated, "life threatening illness changes everything for everyone!" The crisis maybe technically over, but the crisis remains within me. It clouds every avenue, thought, and feeling in my life. I know this intuitively but when I heard an oncologist say this from his own professional and personal experience, I felt vindicated. I live in a world where the majority of people around me don't speak my language (thankfully, otherwise we would have an even more depressed world than already exists!). Grief and loss of a child produces a new language, some people may try to study the language and even be empathetic enough to get some of the language's nuisances. But the language is truly unique for those of us who live in this nightmare of a club.
Dr. Greenberg discusses how we live in a society that loves CONTROL! He is totally correct. We live in a world where parents have their children programed from morning to night, they enroll them into every program and activity under the sun, and the list goes on. For the most part we humans are under some delusion that we can control outcomes and we mostly live by the motto that if we work hard and do the right thing, a positive outcome will occur. TOTALLY WRONG!!! If that were the case, Mattie would be alive today! Also if you doubt what I am saying, I encourage you to talk to any parent of a child with a life threatening or worse terminal diagnosis. As Greenberg aptly points out, parents like myself have learned the harsh lessons in life and that is that things are NOT in our control. So what happens to people like myself who have learned this truism early in life?!!! Should I just close up shop, knowing that life doesn't make sense and is unfair?! It is hard to say, but I know one thing is for certain, I do not share the same mind set and priorities as those in my life who have healthy children. I would love to delude myself into thinking that what I do impacts the future, but I know better. Which is why Greenberg feels that a pediatric cancer diagnosis permanently impacts a family's life. How could it not!?
Greenberg mentioned that he was able to technically "cure" children of cancer, and yet some of these families were not "healed." They aren't healed because like our Mattie Miracle new slogan states....... "It's not just about the medicine!" There are emotional, social, and psychological components to the disease that actually make the overall treatment extremely complicated. Whether a child survives or dies, Greenberg stated, "life that emerges as a consequence of cancer can not escape the circumstances that created it. The impact of cancer reverberates throughout time." Indeed, I couldn't have said it better myself. As the fourth anniversary of Mattie's death approaches, I can safely say, the pain, sadness, depression, and anger remains. Can I put it somewhere, certainly? I suppose I do, which is why many of you think I am highly functioning, but as I say often............ don't judge a book by its cover. Mattie's death is ingrained within me and to accept me, means to accept this simple fact. So whether this is Mattie's fourth anniversary, tenth, or twentieth, that is just a number.... it still matters and feel as if it were his first anniversary.
The Difference between Curing and Healing: Dr. Mark Greenberg
http://www.youtube.com/watch?v=6wj6i0lijK8
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