“It’s Not Who I Am Underneath, But What I Do That Defines Me:” Wes’ Superhero Story

If you’re not familiar with the quote in the title of this post, it’s from Bruce Wayne in Batman Begins. We chose it because nothing could better describe young superhero Wes Chang (and because Batman is Wes’ favorite superhero).

To understand how we got to it, we’ll start with Wes’ origin story.

It was February 2014, and Wes had been exhibiting strange symptoms, including two lumps on his head and a worsening black eye, none of which could be explained by toddler tumbles. He wanted to sleep a lot and began vomiting daily.

Cancer had crossed his mother Caroline’s mind, so she wasn’t completely shocked when at just 15 months old, he was diagnosed with stage IV high-risk neuroblastoma. But the news wasn’t any less easy to handle.

“I mostly felt sick and sad and scared. It’s an awful feeling.”

Shortly after that, he tested positive for N-myc amplification, which is associated with more aggressive tumor behavior.

Wes, NeuroblastomaWes during treatment.

Learning what the treatment for this type of cancer required (chemotherapy, surgery, stem cell transplant, radiation, and immunotherapy) was worse for Caroline than hearing the diagnosis of cancer.

“My head was spinning, tears streaming, and I wondered if this was even survivable.”

Wes’ oncologist, Dr. Kimberly Dunsmore, told Caroline that she had treated children “as bad as Wes” that had done well. That was all she needed to hear. At that moment, she and her family were “all in” and prepared to take on whatever came next.

Wes, NeuroblastomaOne of many hospital visits.

Managing Wes’ care became Caroline’s new job, and she was determined to do it well. But at the same time, she was worried about her two older children, Jet who was 7 and Avery who was 4 at the time. She kept asking herself how they would deal with this and whether or not their lives would stay normal.

Wes, NeuroblastomaSide view of a superhero.

It turned out that their family and friends were also “all in,” and they were surrounded with overwhelming support. Jet and Avery enjoyed lots of sleepovers and visits from their grandparents and cousins, and they were showered with attention. It kept their spirits up as Caroline tended to Wes, who didn’t know what was happening because he was just learning how to talk.

Wes, NeuroblastomaAvery, Wes and Jet – always laughing.

Jet and Avery became Caroline’s saving graces whenever they returned from a long hospital stay. They played with Wes constantly and kept him laughing when she could barely stand up from exhaustion.

“As parents, we were sleep deprived, physically, and emotionally drained. Sometimes the worry was paralyzing. I learned to live day by day, and that making plans was a thing of the past. It was an entirely new way of existing for me.”

Wes, NeuroblastomaNever too far away from her superhero.

But Wes kept doing well, and his cancer was disappearing, so Caroline was always encouraged to keep going, to fight on! She was thankful that Wes was so young and that she didn’t have to explain things to him – it was just life for him, and he kept moving and playing right through it.

Just like Batman defeats the bad guys, Wes reached remission (or NED status) relatively early in treatment, and he has remained that way for 2 1/2 years. After protocol treatment finished, he was enrolled in a clinical trial for relapse prevention that has had minimal side effects.

“I like knowing that we are contributing to research. That’s why I support CureSearch and its fundraising events. Wes not only feels like a star when he’s honored in front of family and friends at events, but I also feel like I’m supporting something that truly matters.”

Today, Wes is 4 years old and loves to play with his superhero action figures. He has quite an active imagination, and loves to race (only if his family lets him win). This spring he is playing his first sport, T-ball!

Wes, Neuroblastoma

“Wes is a superhero because of his ability to bounce back after everything we put him through. Cancer could not keep him down!”

With his superhero spirit, strength and stance, we doubt that anything can keep Wes down.

Help us fight the villain cancer in our countdown to National Superhero Day by donating toward lifesaving research. Help us give superheroes like Wes a chance to live longer, better and healthier lives.

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