THE BLOG
03/18/2014 11:23 am ET | Updated May 18, 2014

Refusing to Surrender

Ron Brounes

My younger daughter is clearly entrenched in the "terrible threes" (a slight derivation from the "terrible twos" because she is so much more "mature" now). To the outside world -- her teachers, her friends' parents, especially her Mamaw -- she is charming, polite, and outgoing; they scoff at our insistence that she can ever misbehave. And yet, behind closed doors in the friendly confines of home, she is often an entirely different person altogether, especially when she doesn't get her way. The latest request (demand, tantrum) came bright and early this morning at 6:00 a.m., when she "asked" for Cheetos for breakfast (really not that outrageous). My refusal was followed by tears, screams, and the always hurtful "I don't want Daddy." Unfortunately, my "no" has come to mean, "I will say 'no' five more times, walk away in a huff as a cue for you to start crying hysterically, feel badly about my perceived overreaction, and then return, give in, and perhaps even apologize." (So, how were those Cheetos, sweetie?)

Her older sister learned about my less-than-decisive "no" years ago. She has mastered the art of negotiation and persuasion and now possesses debating skills comparable to those of a second year law student. I limited my analogy to a second year, because her mother (my dear wife) actually earned that law degree and has more than a few years of "arguing" experiences as an trial attorney so she completely sees through my daughter's inexperience. Still, I am no match for my 7-year old's persistence and no longer have the stamina to win many battles of wills these days. (At my advanced age, that stamina excuse seems to enter the equation more and more.)

I love my kids more than life itself. But between the tantrums and the arguing and the bossiness and the talking back and the selective hearing and the procrastination, I occasionally (very, very, occasionally) long for those carefree days when ESPN ruled the house; mornings meant coffee, the newspaper, and no carpool; and the snooze button actually served a purpose on my alarm. However, when I have one of those wishful kid-free moments, I think of Zach and his family (and I hug my daughters more tightly).

MEET ZACH.

I never met Zach, but he is one of my (super-)heroes and has taught me about strength, courage, and living life to its fullest, despite the severe pain and hardships thrown in his path. I never met Zach's mom, but was so inspired by the eloquence by which she displayed her love for her son, the optimism she conveyed in the most trying of times, and the passions she shared with those who followed her tragic story. I never knew Zach's dad as an adult and, though we were in the same college fraternity, our paths have not crossed in 30 years. And yet, I have learned a lot from him about fatherhood and family and patience and perseverance.

In early 2010, 5-year old Zach was diagnosed with Acute Myeloid Leukemia (AML) and his chances of long-term survival were not very high. For four years, his mother chronicled his daily battles through Facebook postings on ZachAttacksLeukemia and some 13,000 followers got to know Zach and his family as he fought through more chemotherapy and radiation than most adults could handle, experimental drugs and clinical trials that brought temporary signs of hope, and an unheard of three bone marrow transplants. His journey began in Dallas, took him to Memphis, and finally to Seattle as his family sought the absolute best medical facilities and the most skilled physicians to help him continue his battle.

I am not a doctor and don't pretend to play one in this blog. I learned a bit about AML through his mother's postings and thought I understood the direness of his situation (somewhat). However, like so many ZachAttacksLeukemia followers, I wanted to believe that Zach would be that exception to the devastating AML rule and lick this dreaded disease. My doctor friends who understood better than me argued that long-term success was unrealistic, but somehow I was certain that Zach would be that miracle child, the one who lived to tell his story, and give so many others hope and courage for a similar recovery. After all, his mom always remained so positive, upbeat, and hopeful; she focused on favorable developments in his treatments and highlighted Zach's daily actions that made him seem and feel like an active little boy. She ended each post with Zach's now famous motto "No Surrender."

A TRUE SUPERHERO

I read about Zach's contagious zest for living and how he enjoyed more life experiences than people many decades his senior. Zach loved to emulate Batman and Superman, though he possessed super human powers far beyond any of his fictional super heroes. He relished his "guys night outs" with his dad and others and especially enjoyed the movies that were not typically considered "kid-friendly," though he possessed a mental toughness that far exceeded most adults. He was a huge fan of Harry Potter and had the opportunity to visit Wizarding World at Universal Studios, though he could conjure up far more powerful spells and provide a magical spirit that brought so much joy and happiness to all in his life.

His mother posted photos that showed an ailing child, but also one with a positive attitude and an undying spirit that oozed optimism and made everyone believe that "no surrender" would result in a cure. He might be donning a mask and cape, waving a sword to ward off his enemies, assembling Legos with the skills of a master builder, or even enjoying a skydiving experience at iFly. These moments she captured and posted on Facebook could make followers forget about his illness, if only for a short time.

Zach's leukemia went into remission twice, though sadly the positive news was always short-lived and the invasive and painful treatments soon resumed. His doctors referred to him as a "medical marvel" and "the toughest kid they ever met." And yet, almost four years to the day of his diagnosis, Zach suffered complications from his latest transplant and lost his battle against AML; his parents lost their son and so many hopes and dreams that all moms and dads have for their children; his siblings lost a role model, a big brother to show them the ropes, a practical jokester to teach them life lessons the hard way, and 13k+ friends, family members, and total strangers across the globe lost a source of inspiration and a true hero.

BE STRONG. FIGHT ON

In the aftermath of his passing, his family threw a massive celebration of his life; stories and pictures were again posted on the Facebook page. Children came dressed in costumes; family and friends shared wonderful memories; guests enjoyed popcorn, candy, and Coke, Zach's personal favorites; and balloons were released to the heavens by those in attendance. His mother wrote that with no Bar Mitzvah or wedding in his future, they "wanted to throw a celebration that Zach would have been proud of." The family also is establishing a foundation, "Be Strong. Fight On!" to fight childhood leukemia and the "no surrender" motto lives on. They have encouraged everyone to donate blood and send photos of them doing so in memory of Zach. Countless blood drives have been held, including one sponsored by his dad's old fraternity.

Death is the inevitable end to a life lived well. Regardless of age or circumstance, when that last breath is taken, family and friends are wrought with emotions, overcome with a sadness about the finality of life. They are never truly ready. Just one more visit with Grandma; just one more ballgame with Dad; just one more "heart-to-heart" with Sis. But when a young person leaves this world; when parents bury a child who had only begun to experience life; we all struggle to make sense of the loss. And even the most heartfelt condolences -- "He is in a better place;" "She is no longer suffering," "His memory will always be for a blessing." -- provide little comfort.

As Zach's mother wrote, they will not be planning grand events like a Bar Mitzvah or wedding for him. They also will miss out on his school graduations, passing that driving test, landing that first job, becoming a dad of his own. They can only fantasize about what kind of adult Zach would have become, though his nine short years surely provide some indication that he would have accomplished great things. (He was a super hero, after all.) But, the day-to-day life experiences are what may be missed the most: little league games, summer camp, sibling bonding and rivalries, first true loves and broken hearts. Undoubtedly, there would have been teenage quarrels between parent and child as well. At times, he surely would have engaged in tantrums, heated arguments, bossiness, backtalk, selective hearing, and procrastination. And they certainly would have relished even that part of parenthood. In the grand scheme of things, Cheetos (or Coke) for breakfast is hardly a punishable crime. Because they understood the long odds and the direness of his disease, Zach and his parents packed a lifetime worth of experiences into nine short years and now have memories that will last forever.

THE TERRIBLE THREES (AND SEVENS)

My younger daughter is clearly entrenched in the "terrible threes." And yet, whenever I am preparing to leave the house -- whether in the morning for work, in the evening for a night out with my bride, or just to get the newspaper in the front yard -- she insists on a "Huggy and Kissy." And I always happily oblige. My older daughter wins virtually every battle of wills and sadly they seem to occur more and more frequently (and we are not even close to the teenage years). However, in the evenings, as a method of sheer procrastination (perhaps), she is happy to share the experiences of her day, what she did in school, who got into trouble, which episode of SpongeBob accompanied her afternoon snack. And I always happily oblige.

Continued thoughts and prayers go out to Zach's family and friends. May the burdens of each day get easier to bear and may his memory always serve as a blessing. May his siblings bring you much joy and happiness (and a few grey hairs) as they live their lives with wonderful memories of Zach and together you retell stories about your super hero. Thank you for sharing your young inspiration with us. "No Surrender."