Tonight's picture was taken on June 15, 2009. The day of Mattie's sternotomy. In fact we were waiting in the pre-op area, and as you can see from Mattie's eyes, he was already being sedated. I will never forget this pre-op area. Basically it is one big holding room, partitioned with curtains. All the patients in there (the three times we were there) were all adults. Mattie was the ONLY child. The space was chaotic, doctors and nurses were running around and firing questions at you. In fact, we met Mattie's anesthesiologist for the first time in such an environment. During the first major limb salvaging surgery, the anesthesiologist and I were at odds with each other. She made me tense, she did not want to hear from Peter or myself, and even worse, she seemed to have contrary opinions about pain management from Mattie's surgeon, Dr. Bob. During Mattie sternotomy however, we had a wonderful anesthesiologist who was trained in Rome. He had a very warm and competent personality, and I think he really related to the nightmare we were living. In any case, in tonight's picture, you can see that Linda (Mattie's childlife specialist) attached a note to Mattie's gown. The note said: "Dr. Chahine, give us a Mattie Miracle." Mattie, Peter, and I were talking about a Mattie Miracle before the surgery (in that once all the lung tumors were removed, he would be cancer free), and we told Mattie the story of how my dad wrote a note to his surgeon and taped it to his leg before he was carted off to the operating room. Mattie thought that was a clever idea, so Linda put our thoughts down in writing, and taped it to Mattie! I hear Dr. Chahine got a chuckle out of this note! Dr. Chahine is a wonderful surgeon, and a very devoted doctor. He and I connected immediately, and he visited Mattie once or twice a day, post surgery. One day, he even came in and brought Mattie a toy. Dr. Chahine was just as mortified as we were when he learned that Mattie's cancer spread only six weeks post-chemo.
Quote of the day: I don't care what they say with their mouths--- everybody knows that something is eternal. And it ain't houses, and it ain't names, and it ain't earth, and it ain't even stars--- everybody knows in their bones that something is eternal, and that something has to do with human beings. All the greatest people ever lived have been telling us that for five thousand years and yet you'd be surprised how people are always losing hold of it. There's something way down deep that's eternal about every human being. ~ Thornton Wilder
I met up with Ann for lunch. Before she arrived, I sat at a table, and read a book. The book is not sad at all, but while reading I became teary many times. Why? Well it is hard to explain, most likely a host of reasons. The main one of course being Mattie's absence, but the others revolve around feeling tired, dealing with non-stop headaches, and an overall feeling of being unable to focus on anything. I have had these moments before in the grief process, and at the present time am going through another low. Certainly while I am in this mood being able to concentrate on next steps forward for the Foundation are hard for me. However, while sitting with Ann, I was able to verbalize two things. The first thing is each Foundation decision and activity deeply reflects on Mattie and our love for him. Therefore, I do not want things to fail or not do justice to his memory. That sounds simple enough, but in all reality that puts an extraordinary amount of pressure on me, and with my current state, such pressure lands up paralyzing me.
The other thing I discussed at lunch is my disillusionment with pediatric cancer research. Every pediatric cancer organization is out there beating the pavements saying it is vital to raise money for more effective and innovative pediatric cancer treatments. I certainly agree with this wholeheartedly, or at least in theory. This week, I feel more cynical. In all reality we could throw millions of dollars more at the problem, but will this really help? After all, there isn't ONE type of pediatric cancer, there are over 12 major categories of pediatric cancers, and pediatric cancers behave much differently from adult cancers. In addition, in comparison to adult cancers, the numbers of children available to study with each form of cancer are SMALL. With Mattie's type of osteosarcoma, Multifocal Osteosarcoma, we were told that perhaps one child a year in the entire world develops this disease. If that! So I guess today I felt a feeling of hopelessness fall upon me, and I am not sure if I am angry at a scientific community that failed my son, or whether I am just simply mad that cancer exists. Either case, the more I think about the complexity of the problem the more I realize that throwing money at a major problem is not going to solve it. The problem is bigger than money, it is bigger than science, and while we wait for money to be generated and science to make strides (strides which haven't been really made in DECADES), children and families sit and wait, and also suffer.
Today's lunch conversation carried over into my dinner conversation with Peter. He saw my point, and we then started to discuss actual ways the Foundation can help families psychosocially. So I started doing some literature searches this evening because I wanted to know what others are doing in this area, and how we can either bring this to Georgetown or expand upon it. After dinner, while writing the blog, I noticed I received a text message. When I opened it, it was from my 10 year old buddy, Katharina. We had fun chatting back and forth this evening about a whole host of things, and it leaves me in awe of the beauty of technology.
I received this lovely poem from my friend and colleague, Nancy. She wrote it in honor of Mattie's first anniversary and the struggles and feelings we continue to experience.
OUR LIFE, NOW............ or WHAT IS THE POINT? by Nancy Heller Moskowitz
Each day brings a challenge, a crossroads in my journey.
Do I reach out or stand alone?
Deciding takes longer than I like,
And, at times, decisions change like the wind.
I used to know my plan.
I used to be confident that all would work,
Until,
The day you were taken from us.
So now, I question if others will continue to care.
As your first anniversary has come and gone,
Allies, once present, decided I should move on.
Their silence is something I don't comprehend.
I could count on you, to need me, to want me.
Now I turn to find you not there.
And, I sob; "It isn't fair."
I welcome a signal, however small,
And cherish them whenever they fall,
From the sky, like a butterfly flapping its wings
Or the rustling of the wind through a chime
To a bird eating, at the feeder, on "Your" tree.
Whenever, wherever, I know I will make the time.
So this is the point of a life worth living,
To live and love and cherish each moment,
That heaven allows.
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