In 2011, when our son Declan was just 3 years old, he was diagnosed with primary central nervous system (CNS) rhabdomyosarcoma. “Rhabdo,” is a rare and aggressive cancer that typically develops in the soft tissue of the body, like the muscles. But for Declan, the tumor grew in CNS. The tumors were diffuse — as if a dirty cancer bomb had exploded, leaving shrapnel all along his spine, wrapped tight at his brain stem and lumbar spine. Surgery to remove the entire tumor was not possible and high dose radiation would have damaged his brain in ways that were irreparable, so Declan began an aggressive high dose chemotherapy protocol. 

Over 11 months, Declan had more than 30 weeks of chemotherapy, in addition to three brain surgeries and three port placement surgeries, all while smiling, laughing, playing, and spreading his infectious joy all around him. 

Declan’s dream was to turn 5 so he could ride the school bus. I am not even sure he cared too much about school; it was all about the school bus. But instead of going to school, riding a bus, and turning 5, the hospital became his classroom. He made games out of getting his height and weight checked at each clinic visit. Doctors and nurses; therapists, reading volunteers, and even the gentleman who machine cleaned the floors each day became his playmates. The medicine pole to which he was constantly attached became the extra wheels behind the little motorcycle he often rode for hallway recess.
 
Four months before his 5th birthday, after the cancer jumped from his CNS into his brain, after his walk turned to wobbles and his ability to speak was lost, after he began reaching for playmates we could not see, Declan was called back to heaven.

It’s been 13 years — long enough to grow into a teenager, to get through grade school and high school, to dominate a sport, to lead his brothers into the teenage years and guide them through the rough patches. To attend a dance, learn to snowboard and golf, maybe fall in love, pick up an instrument, travel, gain acceptance into his first-choice university, host a lemonade stand in honor of a tenacious little girl named Alex, who started fighting for his life before he was even born. 

In a perfect, cancer-free world, Declan would have graduated from high school this June. We would be reveling in his goodness, honoring his accomplishments, and supporting his dreams, together with an eye on his future. We would be nesting together in the final moments before he, our eldest bird, spread his wings to take flight.

When we remember Declan, we remember how he lived: joyfully! When talking to him about how even heroes have bad days, Declan’s response was “Not me!”

We carry Declan’s wisdom with us every day. We celebrate his life by perpetuating his goodness and sharing our own goodness with others. We continue to advocate for better treatment options for kids with cancer and ask others to do the same. We all can make this life better for our children and to live by his mantra: No bad days.  

Declan didn’t get the chance to grow up, but together, we can give more kids that chance. Support Alex’s Lemonade Stand Foundation in funding smarter, safer treatments for kids with cancer. Donate, host a stand, or share Declan’s story.