My new meaning of December 7th and Resilience

All my life, December 7th had no special meaning or importance to me.  The same held true for my family...yes, we pay tribute to it respectfully as Pearle Harbor Day, but for the most part, it was just another day...a day often busy in anticipation of the upcoming holidays, but in the end...just another day in December. 

That held true until December 7th 2009 when it was confirmed my 6-month-old baby had an aggressive form of cancer that had forcefully grown in his innocent little body.  Much to our dismay, and following months of my attempts to seek the proper diagnosis for William, this nasty, unwilling demon had already grown to 10 centimeters and completely filled portions of his abdomen - shoving aside the organs that should have consumed that space and encased nearly all vital blood supplies and nerves of this very critical area of his body.

Our lives, had we grown to know them to that point, halted within a matter of a day of learning a mass was found... to hours later with the confirmation it was cancer. 

The experience of the past year has been an unimaginable nightmare...one you just can not wake from.  At times, it has seemed like a Groundhog Day affect - the same testing day... over and over...

The past year has been an evolution of interventions...one that has often been difficult to sustain, frustrating to navigate, a roller coaster of emotions, purely exhausting through and through....and only reconfirms that we as humans just do not have all the answers. From the process of diagnosis, chemotherapy, a life-threatening resection surgery in February, approximately four months hospitalized, countless doctors appointments, multiple serious central line infections, five surgeries, handfuls of invasive diagnostic tests, four rounds of full-body cancer scans, five months of uncontrolled vomiting and 10 months of total parenteral nutrition (IV nutrition)...(I'm loosing count of things), but needless to say, it has been one challenging year.

Fast forward now to a full year later.  William is now 18 months old.  He is bigger, more active, stronger, more developmentally advanced, is able to do just about all the things that other 18-month olds enjoy doing....he is learning new things every day....he is the sweetest, most lovable little guy you could ask for...

but....

his life is just different than all the other 18-month olds you'd ever know.

And as much of a tremendous success it has been to achieve "no evidence of disease" from the cancer perspective, in many ways, William is much more "ill" today than he was a year ago.  I know this sounds terribly ironic, selfish...even inaccurate to some....but in a sense, this is our reality.  William now has multiple serious risk factors that he carries, that truthfully, were not even a consideration a year ago.   

To top it off, this little amazing boy has been through more than any adult we all  know has been through.  He has lived with pains beyond what we can imagine.  He has literally been medically assaulted for the past year.  For a full year, he has lived with a plastic catheter tube coming out of the center of his chest to which he receives his life-sustaining IV fluids through for 16 hours a day.  He has a large dressing bandage over this site that is changed at minimum once a week - during which his little active arms are held down so not to contaminate the sterile field during dressing changes.  He has a plastic "button" in the middle of his abdomen of which is opened and yet another tube is "plugged into" that delivers fluids to his gut. 

William is attached to tubes and a pump all day long - everyday.  He has to carry around a backpack with his pump and fluid bag whenever he is playing, whenever he is exploring his world like little 18-month olds should be...and when the pack is not on his back, it is right next to him with the subtle hum of a battery-operated pump.  It is there in the car next to him, at his highchair during mealtimes, hanging on an IV pole next to him when he is sleeping...all the time.  William is given multiple medications 3 times a day, whether he wants them or not.  He suffers from multiple explosive episodes of diarrhea every day.  (Now if you know me well, you know I'm not one to use the word "suffer" often.  In this case, that is the only word that properly comes to mind.)  William typically goes through 3 full outfit changes every day because of this diarrhea problem.  Anyone who has recently changed an 18-month old's diaper knows how much they hate the process at that age.

A year later....
I treasure many things I am thankful for.  First and foremost, I am forever thankful for the love and support of my family and close friends who have been there for us.  My meaning of  "family" and "community" have forever been broadened to understand that life is not about making your own little piece of the world your own, but rather is reliant on the love and support of others to be there for each other.  We each have our own skills and talents - it is when those come together to help each other that we are all most fulfilled in life.

I am thankful for Nicholas.  He has been a huge motivator for me to slap on the happy face everyday and to forge ahead as if things are not as difficult as they often feel.  He gives me a reason to smile and laugh everyday....(and often many other emotions as well, some not so easy to handle, but still necessary to keep things in perspective).  He bring tremendous joy to William as well.  Their laughter together is the greatest of medicines, beyond anything modern medicine can provide.

I am thankful for our ability to successfully seek and secure the best possible treatment for William.  I am thankful for the resources we have been blessed with that have made much of these possibilities afforded to us.  I am thankful for my own background knowledge in the medical field that has given me some support through the seas of medical terms and becoming the best possible advocate I can for William.

Through all of this, it is often difficult to not think from your own perspective.  How hard something is for us to manage, how difficult it is to wake every day and face the realities the day is bound to bring, how hard it is at times to deal with life's little stressors...or the big ones for that matter....the disappointments, the interpersonal challenges with friends and family, dealing with your own intrapersonal struggles...but in this case, we need to stop and think from William's perspective.  One thing is clear... this little 18-month old is the resilient one.  He is the one who is positively coping with this adversity that consumes his life...and doing it with one big smile!

“What lies behind us and what lies before us are tiny matters compared to what lies within us."

Ralph Waldo Emerson