Thursday, September 1, 2011

The September morning(s) that changed EVERYTHING.

It is September 4, of 2011.

We are quickly approaching the 10 year anniversary of the 9/11 attacks on the United States. 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, leaving the country in financial havoc, and most of all it created new fears in American citizens. It changed the way we thought 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 felt part of the conversation, and because I had nothing to add and I didn't really get what all of the hoopla was about?! I wonder if the children of today feel that way about September 11th?

My children were just babies when the 9/11 attacks happened. But after I watched the towers fall live on national television, I fully understood. I remember exactly where I was, and what I was doing the day the United States was attacked, the day our national security came into question. Growing up in a military family, I was disillusioned; I wondered how our government could have failed us like this?

I try to remember what it was like before.

Before our national safety, security, and ultimately optimism were abruptly taken away. Even though I was nowhere near NYC or Washington DC on that fateful morning, it reshaped the way I thought about everything, from buying duct tape and plastic to protect my family against anthrax, to worrying about biological attacks on our air and water.

If you were old enough to remember that dreadful morning, you probably remember exactly where you were and what you were doing, whether you were running through the streets of NYC, searching for 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, there were 2977 victims who 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.

But today, on 9/4, I'm thinking of 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! There is a dirty little secret in America that no one wants to talk about. Since 9/11/2001, an estimated more than 20,000 (a) 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 wants to talk about it. It’s an unpleasant reality. Those who haven’t been through it can hardly bring themselves to consider it. According to, 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 on September 4th, 2003. Eight years ago today. It wasn’t aired on national television, and didn’t involve crashing planes, and collapsing buildings, but rather happened quietly one morning in our local Children’s hospital. I have trouble remembering what life was like before or after September 11th, because that day in 2003 changed EVERYthing again, with the same kind of over-powering shock and horror.

My four year old had attended two days of preschool before being sent home with a fever.

By the end of the week he was in the hospital. The doctors ran every test imaginable to find out what was wrong with him, but they couldn't find a diagnosis. We were understandably relieved when the initial lymphnode biopsy had come back benign, and we were confident it was some random childhood illness. He would be fine.

Cancer never entered my mind. THAT couldn't happen to OUR family!

But he was still sick.... Why was he still sick? Could the array of antibiotics be making him worse rather than better?

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, all we knew was that something was definitely wrong. Both mornings I was helpless to do anything.

That fateful September morning, my blond-haired, blue-eyed baby sat watching cartoons from his hospital bed. He was totally inattentive to what the doctors were saying. Similarly, on the morning of 9/11, my babies in diapers and pajamas had ambled about living room playing with toys, oblivious to the news images that had captured my attention on the television. I stared blankly at the doctors, the way I had stared aghast at the image of 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.

So are the words Mom, he has lymphoma”.

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. On both days the next few minutes were a blur of phone calls to loved ones.

In the hospital on 9/4, they quickly gathered our belongings, and hauled them on a happy little-red-flyer-wagon to another wing of the hospital, the pediatric cancer ward also known as the “green unit”. Once we were settled into our frightening new surroundings, they brought me a mountain of paperwork to sign. A named, possible side effect of each and every treatment and drug was listed as “death”. My heart crashed the way it did when the second WTC tower fell.

I knew then, that nothing would ever be the same.

On Sept 11th, flights were grounded and the United States came to a screeching halt. On Sept 4th, plans were cancelled, and my world and the world of my 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 he survive? Would our family survive intact?

The world could have ended in September of 2003, and I think I would have scarcely noticed from the shadow of our 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? Could cleaning up chemo vomit kill my unborn child? (I was 6 months pregnant with my 4th child.) Was it safe to fly? Was it safe to send my children to school or 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, a "new normal" took over. As a country, we became accustomed to monitoring threat levels with a color system and heightened airport security regulations. As a mother, I learned to monitor and manage my child's immunocompromised state with blood counts, complicated ANC calculations, and intense isolation.

Fortunately, our country has been able to ward off additional major attacks on U.S. soil in the 10 years since 9/11. Unfortunately, my son relapsed 9 months into his 1st year of chemo treatment. While this relapse was far less surprising than the initial diagnosis, the mental stress of it was far more damaging. It was an indicator that my son could lose his personal war on cancer.

In the 8 years since that day, I have watched far too many of our littlest warriors lose their battle. While it is amazing that childhood cancer survival statistics have improved so much over the last 30 years, you must remember that for each ONE child, the survival rate is either 100% or 0%. There is nothing in the middle! And many, many of those who are lucky enough to survive, go on to have life-long health problems from years of toxic chemo, radiation and surgeries.

As a mother of a childhood cancer survivor, I worry every day that it could happen again. The PTSD that blankets NYC is also a staple of our home. Every fever in my household creates a panic that could be likened to a New York city dweller spying a plane that appears to be flying too low. Sometimes at night, I sit on my son's bedroom floor and watch him sleep, watch him 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 ONGOING threat to ALL of our children, 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 make a difference.

The first step is awareness! Let’s not sweep it under the rug because it’s too hard to think about!

Did you know that 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 any childhood cancer.

If American citizens and government were as outraged and horrified by this threat to our children, as they were in the wake of 9/11 - something would be done. Something MUST be done! What will you do? Will you help spread the word about this national tragedy?

To find out how you can help, go to And wear your GOLD ribbon in honor and memory of our littlest Cancer survivors and victims.

(a) Numbers for 2002-2007 collected from , and 2008-2011 numbers were extrapolated from the National Cancer Institute . To see how I calculated the numbers used in this article you can look at the pdf of my spreadsheet.

For more information about my son's battle with Anaplastic Large Cell Lymphoma and CNS Brain Tumor relapse, please see his website at: .