Emily

(I will be keeping this post up longer than my normal 24 hour period because Emily deserves at least that.  And probably a pony, too).

I am not truly dazzled by much.  Perhaps I am a bit jaded, but it takes something really special to impress me.  I never could understand Blue Man Group.

Yet since April 2011, I have been dazzled repeatedly.  In following the amazing struggle, grace, and determination of a family fighting childhood cancer, I have found myself humbled. Ed and Nadia Beazley are friends of ours who continue to battle obstacles that would bring most of us to our knees. Their story needs to be told.

The first time I met Ed and Nadia, it was the first weekend after September 11, 2001. It was their wedding.  Attendees were still in shell shock over the national tragedy, and I felt horrible for the young couple starting a life together on such a somber note.

While many couples might have ignored the giant elephant in the room, Ed and Nadia recognized the deep wounds of those in attendance. They chose to embrace a mood of patriotism and togetherness. Bagpipers marched in playing not their usual wedding selections, but instead played several patriotic songs that inspired many to stand or sing along.  I will always remember that moment as the start of my own healing process after 9/11. Ed and Nadia, as it would turn out, seemed to have a special knack for mending the wounded.

When Nadia became pregnant a few months later with her first daughter, Emily, she was thrilled. I remember bumping into her and she revealed her due date. It was September 11. She must have read my look of oh no and told me confidently,"It's not like anyone ever has their baby on their exact due date, right?"

Of course, our beautiful Emily was born on September 11.

Little Emily faced a very tough first year with a host of health issues that threatened her life and included the likelihood of profound developmental delays. She was born with PPHN (persistent pulmonary hypertension) and she required an ECMO (heart and lung) bypass when she was only 4 days old.

Ed and Nadia again channeled their inner healers and saw her through a seemingly hopeless situation.  Emily wound up attending the same preschool as Daniel, and I marveled at her amazing strides and ability to exceed all medical expectations. She's got a razor sharp mind and marvelous sense of humor. Ed and Nadia had again met tragedy head-on and won.

Yet when my husband got the phone call from a mutual friend telling us that Emily had been admitted to the hospital this past April and that things looked extremely grim, my heart sank. Not again. The family had been through so much, and now cancer? The diagnosis was Stage III T-Cell Lymphoblastic Non-Hodgkin's Lymphoma. Such big words. Such a little girl.

I went to that horrible worst-case scenario place and prepared myself for the unspeakable. Stupid me. This was Ed and Nadia. This was Emily. 

I followed the medical ups and downs through Facebook and CaringBridge. I spoke with mutual friends. It seemed like every step forward also included two steps back. While still aggressively fighting Emily's cancer, Ed and Nadia advocated tirelessly to bring attention to childhood cancers. I had no idea that pediatric cancer is one of the most under-funded research areas out there, despite it killing more children than genetic anomalies, cystic fibrosis, and AIDS combined. 

Emily returned to school this past week, and for a girl who has had so much struggle in her life, her biggest wish is to just feel normal. So with the help of friends, she put together a video to re-introduce herself to her classmates, detail her journey, and let them all know that she is ready for anything.

Please have a look:




When I asked Nadia if I could share her family's remarkable journey, she told me that they are simply following Emily's cue.

If you are interested in learning more about pediatric cancer research, or supporting CureSearch please visit: http://www.curesearch.org/.

Thank you, Beazley Family for all you do to inspire those around you.  And happy first week back at school, Emily!  We can talk about your future chess lessons another day.  Maybe Monday.

To read more on Emily, click here.