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.

Wednesday, March 11, 2015

Love and Ladybugs

I see a ladybug in my house about once a week.  This has been consistent since October.  The month he would have turned 7.  The month he died.  I think they are hibernating in my home and they are my most welcomed guests. 

Of course, there is the occasional bespeckled corpse – belly up by my windowsill.  Sometimes, I might give a ladybug a little tap if I think it is dead, and he or she starts walking again.  I like to think Ty breathes a little life into them just for me… just for a moment…

I don’t watch them for long. I prefer to take notice for a few seconds, then carry on with whatever I was doing.  It never fails that the ladybug is gone by the time I glance back.  Always gone. My visits from Ty are frequent, but brief, and because of that, it feels even more magical – as if it was a secret between the two of us. His whisper in my ear.  Sometimes I see one out of the corner of my eye just at the moment I am heavy with grief – my head swimming with thoughts of Ty and cancer and longing.  Other times they appear when I least expect it and I stop for a moment to think “Oh, Hi Ty."

Always, always, always… they come to our events for the nonprofit we founded in his memory.  I have one board member who sees one every time she’s packing her car with t-shirts and other SuperTy merchandise.  They are spotted in swarms at the Mess Fest.  They were at Carle Place High School Spirit Night, and while setting up at Rock for Research in Dallas.  Just the other night, I was up very late preparing for our upcoming Share the Love event.  I was moving item after item into the living room to do an inventory of our incredible auction items, and there on the floor – crawling among them – was my little red friend.  It never fails.  Mellissa, who is working like crazy to prepare for Satruday, had a visit from her ladybug today - I just saw the photo she posted to Facebook.  It never fails.  

Friday night my sister-in-law, my niece, and my neighbor all came over to help.  I told them about the ladybug and said, “You guys get them, too, right?  I mean, you must have them in your house.  When was the last time you’ve seen one?” 

All three of them assured me that they can’t even remember the last time they’ve had a ladybug in their house.  “It’s been months and months – maybe even years!” they told me. 

I can’t tell you what it means because I have no idea what happened to my son or where he is now.  I can’t see him, touch him, or hear his voice. But I can assure you that the ladybugs are more than a coincidence.  So are the multitude of other signs I have gotten from him, and continue to get on a semi-daily basis.  There is something more to this life, thank God, and I believe with all my heart that he sees how hard we are all working to make a difference, and he approves J  Until I see him again, I carry his heart with me… I carry his heart in my heart. 

Come Share the Love with us this Saturday – tickets are still available for purchase here, or you can buy at the door. 

Look at all of this loot!  This hand painted yoga mat makes me burst with happiness.  It's going to be almost too hard to part with at the auction (but, then again, I don't do yoga so it's okay :) xoxo