Monday, March 30, 2015

Cancer: The Emperor of All Maladies

The book sits on my nightstand.  I have referred to it often and found Siddhartha Mukherjee’s eloquent writing to be so perfectly explicative whether one has studied cancer at the PhD level, or for someone like me whose own child was diagnosed and who is desperately trying to learn about this evasive disease that took hold of my son.     

I first learned that Ken Burns agreed to produce a documentary series based on the book for PBS in early 2014.  When I was asked if I would participate in a series of promotions for the documentary, I jumped out of my chair with enthusiasm.  I was so certain that a documentary like this would be crucial in helping the public better understand this disease that affects each and every one of us.  The magic that they created out of my clumsy interview simply takes my breath away. 

My son was diagnosed in 2010 and I have since been completely wrapped up in cancer -- childhood cancer in particular -- and I am still overwhelmed by its complexity.  From trying to understand, “Where does it come from?” and “How did this happen?” to “What do we do to destroy it?” I expect this documentary will be eye-opening. 

Last week I attended the premiere in New York and watched 30 minutes of footage that was pulled from the complete 6 hour series.  What unfolded on the screen in front of me had me glued to my chair at some points, and walking out of the room at others.  Even after all I’ve been through, all that I’ve witnessed first-hand, I was surprised by the range of emotions I experienced. 

There was historical video footage of U.S. Presidents, one after another after another over decades, who declared cancer a national priority and who claimed a cure is on the horizon.  It was a sinking realization of just how long we have been trying to beat this beast.  A punch in the gut. 

In order to tell the history of cancer, it is necessary to focus on the incredible advances that have been made in treating leukemia.  The progress that has been made is mind-blowing, but when I saw the word “Vincristine” across the screen as one of the first agents that helped to cure these children in the 1950s, I couldn’t control my tears because 60 years later my son received Vincristine for his brain tumor. It was ineffective, the side effects were horrific and he deserved better. 

We are at the cusp of discovering alternative, therapeutic treatment options that can effectively fight cancer with less toxicity, but they just aren’t available to treat most cancers – at least not yet.  It’s not happening fast enough, and there are children who are running out of time.   I saw my beautiful son’s face in the photos and video footage of every desperate child on that screen and couldn’t help but think, “God, we have come so far on one hand, and on the other hand we have made no progress at all.”

I am excited about the level of knowledge that has been gained.  I was getting chills when listening to the oncologists and researchers talk about how much we finally know and, more importantly, understand about cancer on a cellular level.  For the first time, we have a foundation of real knowledge on which to build our new plan of attack, and that is so hopeful.  However it is misleading to position the progress that has been made against childhood cancers the way it is being portrayed in some of the reviews I have read. 

Yes, today doctors can cure 80% of childhood cancers… but this statement greatly downplays the need for private funding of research. That 80% lumps all childhood cancers together into one category and paints a picture of great progress, which is a grossly inaccurate portrayal of the real situation.  There are 12 main types of childhood cancers (each with hundreds of subtypes) and those 12 childhood cancer categories are all very different - with very different cure rates.  The most aggressive childhood cancers including brain tumors, neuroblastoma and sarcomas, have not seen an increase in successful treatments over the past 20 years, yet the diagnoses rates for those cancers have increased 29% in those same 20 years. 

I fear that the excitement around the incredible progress that has been made in understanding cancer and how to treat it will give the false impression that research funding has done its job.  On the contrary, research funding is desperately needed now more than ever in order to harness this knowledge and catapult the development of new treatments.  The day must come when the miraculous story of Emily Whitehead that was featured in the documentary becomes a miracle story for every child diagnosed with cancer.

What I have seen of this documentary so far has me convinced that it is going to be a fascinating series filled with staggering information and unyielding hope.  Which is exactly what we need to see.  There isn’t a person in this world who hasn’t been or won’t be affected by cancer, and we must educate ourselves on the history of cancer and the progress being made. 

After the premiere, I had the privilege of meeting Ken Burns himself.  He referred to me as the “Muddy Puddles” mom because he was familiar with my mantra around letting kids be kids in honor of those that can’t.  He told me that he felt his mom in the room with him that night, and I told him that I felt Ty was there, too.  That all of our loved ones lost to this disease were watching and nodding and whispering in our ears, “This is good.  This is very good.  Keep it up.”

Airing March 30, March 31 and April 1 on PBS.


  1. I am reading your comments as I watch the second of the three episodes in this series. Time has flown by and progress has lagged behind. God help us to close the gap for all of cancers especially childhood cancer.

  2. so sorry but I have no clue how I missed your few last posts. I have never for a second stopped thinking about Ty and how frustrating it is that people still think that we are so successful at ctreating and curing kids cancer. We are not even close to that. What mom can accept that "there is nothing more we can do for you" and drive her baby home and look into his eyes and promise him he is going to a "better" place. Until all the kids have the cure and the treatment they deserve we aren't progressing. Ty deserves it and every child deserves it.
    Miss you so much my beautiful hero.