Sunday, September 11, 2011Tonight's picture was taken in September of 2008. Mattie's "girlfriend," Charlotte, came over to our home to visit Mattie. She brought Mattie a stuffed animal shark from her summer vacation. What you may not be able to see was Mattie was holding the shark in his hands and was chasing Charlotte with it. Not unlike Jaws, looking for his next victim. Mattie had a great time that day running around outside, spending time with his good friend, and just being a kid. Not a kid with cancer! As Mattie's treatments continued he had fewer and fewer of these kid like moments. But to me this picture illustrates that despite cancer Mattie had the ability to have fun and appreciated the joy of having a good friend. Charlotte visited Mattie at home and in the hospital, which wasn't easy. But true friendship sometimes means doing and facing things that are NOT always pleasant and that push us beyond our comfort zone.
Childhood Cancer Fact of the Day: One out of every 330 children under the age of 20 will develop cancer (Cancer.Net; CureSearch).
I would have to say Peter and I experienced the 10th anniversary of September 11th quite differently. I attribute the great difference to our geographic location. Though our entire Nation and the World were impacted by September 11th, I personally feel that those states which had direct impacts like New York, Washington, DC, and Pennsylvania will never forget this vast devastation and the trauma will always be a part of us. I know when I drive passed the Pentagon each day, I am reminded of one of the greatest tragedies to occur on our soil. For me, September 11 is not just acknowledged one day a year, instead it is something that has become a part of me. After I experienced Mattie's death, I have a solid understanding and feeling for what a personal trauma and loss feels like. Therefore, I can't help but feel complete horror over the thousands of families severed apart because of September 11.
As we went out and about in Los Angeles today, I was frustrated by the simple fact that I did not see American flags flying from buildings. In DC, they are practically on every building, especially in this last week. As I moved around town, I did not see people visibly affected by today's date. I am not sure what I was expecting. I know many may feel that showing we are strong and productive and operating like business as usual is healthy and indicates to terrorists that in the end they did not win. I get that sentiment, but I also understand what it feels like to mourn and lose someone close to me. If I lost someone on September 11th, I would be beside myself with this business as usual attitude. However, I suppose this is life, and those of us who are grieving do eventually do this alone.
Peter told me he ran into four sniper type individuals in our complex this evening. They were in black suits and armed with rifles. These guys were riding in our elevator. Peter was in our lobby and called the elevator down to the lobby to go upstairs. As soon as the door of the elevator opened up, he was greeted by the snipers. Who immediately commanded him to "STAND DOWN." Which I understand means back off. Naturally Peter was in shock to find snipers in our building and to be greeted with rifles. President Obama was in our neighborhood attending the September 11th concert at the Kennedy Center, and these snipers were camping out on our rooftop. Down right frightening.
This evening I went with my parents to see a play entitled, September 10th. There were two story lines occurring simultaneously in the play, one involved a woman in Los Angeles who on September 10, 2001, confessed to her husband that she had an affair. The other story line was how this family processed the next day, September 11th. In theory this play could have been great. A family torn apart by infidelity finds a way back to each other thanks to the sobering reality of September 11. After all, such a great tragedy can help all of us put other issues and transgressions into better context. However, the two main characters (the couple), I absolutely HATED. They left me with such a negative feeling that I actually couldn't care one way or another if they reconciled and found their way back to each other. While this couple was having all sorts of marital discords (in front of their young son by the way), they were also tuning into the TV. In this case, the TV was actually a raised stage in which actors would pop up and give almost a soliloquy of how they were impacted from September 11. These pop up performances became more and more disturbing because they weren't processed for the audience. Instead, the play was disjointed and the ultimate message was in time, we all heal. We go back to our routines (routines that may include NOT going to church anymore because the crisis is over, working long hours because our families are safe and secure again and these connections will always be around, etc), because routines are important. Something about this whole notion upset me. Establishing routines and normalcy again are important, I don't deny that, but that shouldn't take the place of remembering the lives that were lost and the long term effects this has on families.
This morning, the first thing I saw outside the window of my parent's house were deer. A whole group of them were eating my mom's roses. I grabbed my camera, but as soon as I got outside they leaped away. However, I captured a picture of them walking down the street and into the neighbor's property.
This evening on the way to the play, I had another deer sighting. These are sightings Mattie would have absolutely loved. Peter feels they are sightings sent to me from Mattie.
Earlier this week, I received an email from my friend Michelle. She follows another friend's blog as well, and her friend tried to impress upon her readers the crisis of childhood cancer in this Country and also the devastating impact of learning her child was diagnosed with cancer. She makes an analogy of learning your child has cancer to experiencing September 11.
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Childhood Cancer and 911
Let me begin by saying that September is Childhood Cancer Awareness month and ironically, we are quickly approaching the 10 year anniversary of the 9/11 attacks on the Pentagon and World Trade Center. The media is already planning to bombard us with reviews, retrospectives, and re-plays of the footage from that horrific moment in our history. For most Americans the world changed forever on that terrible day. The ramifications of that day included adding new departments of government, changes in airport security, a decade long war, economic/financial havoc, and most of all it created new fears in the hearts of Americans. It changed the way we began to think about our world, our safety and our future. It put Post Traumatic Stress Disorder (PTSD) on the map of the US consciousness.
The only comparable national tragedy in recent history must have been the shooting of President Kennedy. As a young child I remember hearing adults discussing "where they were and what they were doing when JFK was shot." Since this was an event that occurred before my birth, I never understood how something happening on that scale could have such a profound effect on every American household. I wonder if my kids will think the same thing about September 11th as they read it on their IPad in some American history class?
My children were not even alive when the 9/11 attacks happened. But after I drove by the Pentagon and watched that black smoke billowing out and then watched the towers fall later that day on national television, I fully understood this notion of knowing exactly where I was, and what I was doing the day the United States was attacked, the day our national security came into question.The only comparable national tragedy in recent history must have been the shooting of President Kennedy. As a young child I remember hearing adults discussing "where they were and what they were doing when JFK was shot." Since this was an event that occurred before my birth, I never understood how something happening on that scale could have such a profound effect on every American household. I wonder if my kids will think the same thing about September 11th as they read it on their IPad in some American history class?
I try to remember what it was like before our national safety, security, and ultimately optimism were abruptly taken away. I was living in Washington DC at the time and working in the Senate on that fateful morning and it reshaped the way we thought about certain things for some time. We were actually trained to use space age looking gas masks and hoods to protect ourselves from anthrax and other biological materials and forced to at least consider the vulnerability of our air and water supplies.
If you were old enough to remember that dreadful morning, you probably remember exactly where you were and what you were doing, whether like me, you were very aware that the place where you worked was as target, or you were trying to contact loved ones, or like so many across America, just watching the events unfold on your television set in a state of helpless horror.
According to Wikipedia, 2,977 victims died as a result of the coordinated attacks on the WTC, the Pentagon, and United Flight 93. I honor, respect and remember those people, as well as the thousands who have died in service of our country since. Sometimes I wonder what the world would be like if it hadn't happened? I try to remember the optimism we felt as a nation before then - but I can't. Can you? It happened. And it can not be undone.This is about the only scenario I can think of to describe another life-changing event. One that thoroughly stripped away my security and optimism all over again, but in such a profound and personal way that I may never recover! But I will say that since 9/11/2001, an estimated more than 20,000 other innocent American victims have died – and ALL of these victims were children! That would be like having the death toll of the September 11th events 6 or 7 times over in the last 10 years!
Still, no one talks about it. It’s an unpleasant reality for some and for others they simply are unaware. Those who haven’t been through it can hardly bring themselves to consider it. According to http://www.cancer.gov/, approximately 10,400 children under the age of 15 are diagnosed with cancer each year. If you factor in children under age 19, that number rises to around 14,000 diagnoses a year! Every day in the United States, about 38 families have their own personal tragedy that changes their lives forever, just the way we were all changed on 9/11.
My personal September 11th occurred in January of this year. It wasn’t aired on national television, and didn’t involve crashing planes, and collapsing buildings, but rather happened late one night after my precious little girls were sound asleep in bed. Since Paige was acting totally normal and not like someone who is sick, I never dreamed her swollen little cheeks were the indicator of this! No parent wishes a call at 11 p.m. telling you to take your child immediately to the ER that her bloodwork results were “concerning” and that the ER was “expecting us.” I just remember Lowell saying, “so you think it is leukemia?” And the doctor telling us she was sorry to be telling us this news over the phone. I just remember scooping Paige out of bed, peacefully asleep and being so stunned I didn’t have there where with all to even begin to fathom that what peace and security I believed I had, was about to become nonexistent. Cancer never entered my mind. THAT couldn't happen to OUR family!It hasn’t yet been a year, but I have already forgotten what life was like before-- with the same kind of over-powering shock and horror that most of you remember about September 11, 2001. On the morning of 9/11, no one knew what was going on, there was so much confusion and speculation as planes unexpectedly began hitting buildings. The level of uncertainty was the same in our hospital room. I would try and sleep, but it was so overwhelming to wake up and have to remember it all over again and have the reality sink in over and over again.
I stared blankly at the doctors, the way I had stared aghast at the image of that billowing smoke rising out of the hole in the Pentagon or the first WTC tower falling… trying desperately to wrap my brain around the message before me. In both cases, “this can’t be happening,” was my first thought. The image of the 2nd tower being hit and then first tower falling are forever etched in my brain. As are the words “so, you think it is leukemia.” The hair stood up on the back of my neck, my blood ran cold, and the fear and panic and horror of both of those events left me numb and confused and afraid of what was to come. Both events spurred a fury of phone calls to loved ones.
On Sept 11th, flights were grounded and the United States came to a screeching halt. On January 29th , plans were cancelled, and my world and the world of our family also became frozen in time, seconds counted by the ticking of IV machines. Everything was now in question. Were there other dangerous planes in the air? Were there impending attacks coming to other cities? How could we protect ourselves against the terrorists? Had the cancer already spread? How would we treat my baby? How bad would the chemo be? Would she survive? Would our family survive intact? The world could have ended in January and I think I would have scarcely noticed from the shadow of that dreary hospital room.
As the initial shocks faded from these events in our lives, new fears took over. Could an anthrax letter in the mail kill me or someone I loved? Did I really have to wear gloves when changing chemo filled diapers and cleaning up chemo puke? Was it safe to fly? Was it safe to send Katie back to preschool or to attend church? Would we be victims of biological attacks from terrorists in our own neighborhoods? Would my child die from sepsis or a neighborhood outbreak of chicken pox? So many questions, so few answers.
Eventually, over time, the "new normal" takes over. As a country, we became accustomed to monitoring threat levels with a color system and heightened airport security regulations. As a mother, I continuously monitor and manage my baby’s immunocompromised state with blood counts, complicated ANC calculations, and fairly regular isolation. She cannot go out in public places. We can no longer eat in restaurants. No parties. No playdates. No trips to the park or zoo.
Fortunately, our country has been able to ward off additional major attacks on U.S. soil in the 10 years since 9/11. Unfortunately, I still live in fear everyday that my daughter will relapse. It is hard to even imagine the mental stress of that and to know such an event is the first indicator as to whether we will win this war against childhood cancer.
In the 7+ months since that day, I have watch as other families have come into the hospital or clinic new to this battle and my heart aches for them. We have actually been in the hospital on the very day one of these brave little warriors lost her battle with cancer and gained her angel wings. I have read the stories of mothers just like me whose children have relapsed, 6, 9, 18 months into treatment or 3, 4, 15 years out.
As a mother of a child with cancer, I worry every day about this disease, its treatment and the effects of that treatment all the while praying that it is working. The perpetual fears that blanket NYC and are sometimes still felt here in D.C. are also ever present in our home. Every fever creates a panic that could be likened to a New York City dweller spying a plane that appears to be flying too low. And that will be the case for me for the rest of my life! Sometimes at night, I lay by Paige and watch her sleep, and breathe, and on some very dark nights I can still hear the IV machine ticking in my head.
As you reflect on the 10 year anniversary of the September 11th attacks, please also remember that September is CHILDHOOD CANCER AWARENESS MONTH! And September 12th has been named Childhood Cancer awareness day.
Childhood cancer is an ON-GOING threat to ALL of our children one that has already taken nearly (or more than) SEVEN times the casualties of the September 11th attacks, just since that horrible day in 2001! And this beast will continue to attack the hope of our future until we find a cure.
I am appalled when our oncologist tells us how far behind the pediatric cancer research is when compared to that of adults. In 2009, only 4% of the National Cancer Institute’s budget was used for pediatric funding. Young cancer patients often have a more advanced stage of cancer when first diagnosed--yet half of all chemotherapies used for children's cancers are 25 years old! In 20 years the FDA has approved only one drug for childhood cancer. Paige also has a genetic translocation and a type of leukemia that normally shows up in children less than one year of age and most of those children have less than a 50-50 chance of survival. There are no statistics about children diagnosed with this condition who are older than 1. While the lack of information used to frustrate me, I learned that it was probably better as it forced me to rely on God all the more. After all, all the research in the world can’t hamper His power or thwart His purpose, and I think I would rather rely on His hope!
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