Note: Barbara Adams is a member of the Copybrighters writing/editing team.
Even though it began more than 30 years ago, talking about her son’s eight-year journey with a rare white blood cell cancer is not easy for writer Barbara Adams.
Brent Adams was only 17 months old when he was diagnosed with Langerhans cell histiocytosis, more commonly referred to as histiocytosis. It is the most common of the histiocytic disorders, a group of diseases that occur when there is an over-production of white blood cells known as histiocytes that can lead to organ damage and tumor formation.
When Brent was a histiocytosis patient, he endured multiple surgeries, rounds of radiation treatment, and a seemingly endless stream of chemotherapies before being pronounced cancer-free more than 20 years ago.
Adams says her willingness to share her reflections on that time is rooted in her commitment to raising awareness of histiocytic disorders and the nonprofit working to find a cure for them: the Histiocytosis Association.
Since last spring, she has been volunteering as an ambassador for the program, someone who applies their knowledge and experiences with histiocytic disorders to support the association’s ongoing efforts to provide emotional support, educate, and raise money for research.
Currently, Adams is focused on helping children who know a histiocytosis patient understand what’s happening and navigate the fears, sorrow, and uncertainty they might be experiencing. She’s hoping to do that through her three-book series for children, each geared for a different age range. The first one, “Someone I Know Has Histio,” is for ages 6-10, and has been published. Adams’ book for younger readers, “Hold On, Henry,” is in medical review.
“I thought the books could serve more than one purpose,” Adams said. “Not only could they be used to educate the families of patients about histiocytosis, but families could give the books to people they knew to help them understand what histiocytosis is. Just thinking back about Brent's friends and Hilary (Brent’s big sister), it’s traumatic to have a friend who has this kind of mysterious illness.”
“Someone I Know Has Histio” is available in limited quantities while the Histiocytosis Association raises the $5,000 necessary to give free copies to families. Currently, it has received nearly 30% of its goal.
Adams is helping with the fund-raising efforts, confident that succinct, empathetic writing about histiocytosis could truly be helpful. And she should know; thanks to a Family Circle article, she learned about the disease long before it affected Brent.
Despite the Odds
The odds of this happening were slim, to put it mildly. Histiocytosis is exceedingly rare: Only one in every 200,000 children are diagnosed with it while the risk of a child developing acute lymphoblastic leukemia, the most common form of childhood leukemia, is roughly one in 2,000. Nevertheless, Adams happened to read an article about histiocytosis, then known as histiocytosis X, when she was pregnant with her first child, Hilary. She remembers finding the disease’s name strange and the article moving.
“Jeff Toughill had just started the Histiocytosis Association,” Adams said. “The article was about his family, whose daughter had been diagnosed with this rare disease, and they made it their mission to fund research and support families.”
The next time Adams heard about histiocytosis, Hilary was about 5, and Brent was 17 months old.
By then, there had been a couple of indicators that something wasn’t quite right with Brent’s health, beginning with a strange reaction to amoxicillin treatment for an ear infection.
“Then shortly after that, Brent woke up one morning, and his eyelid looked really funny,” Adams said. “We took him to the doctor, and she thought he had a stye.
After a couple of weeks of treatment failed to resolve the problem, the pediatrician told Adams to take Brent to an ophthalmologist.
“I credit him with helping to get Brent’s diagnosis made,” Adams said. “He felt around Brent's face, felt a hole in the bone above his left eye, and immediately sent us for an MRI. They saw bone loss, a hole in the bone, and between that they saw a tumor behind his eye.”
Brent also had a waxy rash on his scalp, another indicator of a histiocytic disorder.
His pediatrician was able to piece together the puzzle pieces: the tumor, bone loss, and rashes. She concluded that Brent most likely had histiocytosis and referred him to Texas Children’s Hospital in Houston.
“Then it gets a little blurry,” Adams said. “He had more tests. They diagnosed him. They put in a portacath so he could receive chemo.”
After a year of monthly chemotherapy injections, Brent seemed to be doing well. But six weeks later, his medical team found the disease had gone into his central nervous system. The situation had become very, very serious.
His oncologist tried one chemotherapy, then another. At age 5, and again at 8, Brent received radiation treatments to the brain.
But the disease continued to advance in his central nervous system.
It wasn’t until Brent’s oncologist tried a previously administered form of chemotherapy, delivered in a new way, that the treatment eradicated his disease. In 2001, when Brent was about 9 years old, he was pronounced cancer-free.
Long-Term Relationship
Throughout Brent’s eight-year illness, Adams said, the Histiocytosis Association was a lifeline. Few people had even heard of Brent’s disease. Through the association, she connected with people who knew exactly what he was going through.
“It was just kind of a mom-and-pop shop at the beginning, but they provided me with a lot of support,” she said.
The association also was a source of hope. With histiocytic disorders being so rare, it was a lone advocate raising funds for research and convincing doctors to join the effort to find a cure.
After Brent’s bout with histiocytosis was over, Adams remained committed to supporting the association with her time and resources.
Last year, she proposed helping in a new way; she asked about putting her 30-plus years of experience in journalism, corporate marketing, advertising, and technical writing to work for the association.
“They said, ‘Well, you know, we have an ambassador program. It’s made up of people who we can sort of count on to help with advocacy, fundraising, awareness. It’s a one-year commitment.’”
It sounded like a perfect fit, Adams said, and she became an ambassador. And when she learned the program includes a project on behalf of the association, the children’s book idea was born.
A New Source of Comfort
Adams approached some psychologists and medical professionals about her idea, and they strongly agreed that the books could offer real value to all of their intended audiences.
One physician pointed out that the books could be applied to other types of cancer. Children who know sick children often struggle, and they don’t have many resources to turn to.
“Knowing that these books could help has been really, really rewarding,” Adams said.
To help the Histiocytosis Association give “Someone I Know Has Histio” to patients’ families at no cost, donate here. To learn more about the Histiocytosis Association, visit its website.
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