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When you train as a journalist, you don’t think the stories you’ll tell will be about yourself (well, except for the Newswriting 101 exercise where you have to pen your imaginary obituary, the only time I’ll ever be referred to as a Pulitzer Prize winner).

Yet since my son, Brent, was diagnosed with Langerhans cell histiocytosis (LCH) as a toddler in 1993, I’ve written about his experience and how it affected our family countless times. The goal hasn’t been to bring attention to ourselves, but to shine a spotlight on the common challenges of the Histio community: delayed diagnosis or misdiagnosis, physical and emotional burdens, treatment gaps, fear, anger, isolation and financial hardships. 

Most recently, I wrote three children’s books about LCH for the Histiocytosis Association. “Someone I Know Has Histio” helps readers explore their own feelings when a friend, classmate or relative is in treatment. “Hold On, Henry”, tells the story of an overly helpful histiocyte, and “Casey and The Messy Clean Up Crew” tells more about the LCH journey, from diagnosis through treatment to a positive outcome. 

The reason I wrote those books is simple: to fill in the gaps of information in a way that’s easy enough for a child to understand. I wanted to speak directly to pediatric patients and the children and adults around them about what LCH is, what it does and why it can take a long time to get better.  That last point – that it can take years to get better – is something our family knows firsthand. Brent was under the care of Dr. Ken McClain at Texas Children’s Hospital for more than nine years, until 2001. Even now, 24 years later, most of the details remain as fresh as ever. Because LCH invaded his central nervous system, it seemed like his treatment was largely experimental (which is how our insurance company saw it, leaving us with a $100,000 out-of-pocket bill at the end). Brent endured three regimens of radiation (two to the brain, one to the tumor behind his eye), nine surgeries (including a nearly 10-hour craniotomy with facial reconstruction when he was 4) and — this is where things get fuzzy — so many chemotherapies it’s impossible to keep track of their order. 

Of course, the good news is that he is a relatively healthy adult now. He earned two associate degrees and works fulltime in accounting. He remains close to Dr. McClain. In fact, when Brent needed someone to do a 50-mile bike ride with him to earn his Eagle Scout award, Dr. McClain volunteered.

Despite the decades that have passed, the advances in diagnosis and treatment, alongside the astonishing growth and impact of the Histiocytosis Association, Brent’s story continues to resonate with patients and families. I know it provides hope, especially since he has stayed well so long.

People often ask if I kept a journal during Brent’s illness and are surprised to learn I did not. Writing was my work (this was before laptops; I’d write on a legal pad in the infusion room or next to his hospital bed) and I needed some separation from it. Yes, writers love writing (or at least we love having written), but at the time, even rehashing the day’s events in shorthand form seemed overwhelming. I’m all in favor of journaling. It just wasn’t for me. 

Whether writing is your thing or not, we’re hoping to share more stories here and in the media. That will help us grow our community and expand awareness of histiocytosis. Do you have a story to tell? Contact our Strategic Communications Associate Peter at Peteryanefski@histio.org