Honorary Ambassadors Who have Served

Hi! My name is Lindsey. I am a twenty-one-year-old nursing student at New York University. I was four years old, about to turn five, when I was diagnosed with Langerhans Cell Histiocytosis in my skull. I was very fortunate because the tumor was removed with surgery, and I haven’t had any complications since the procedure. Doctors inserted a bone plate and four screws to cover the void in my skull.

I am incredibly grateful to be connected to this special, rare disease community. For many years until I contacted the Association, I had never met anyone who had fought Histiocytosis, like me. Being able to talk to other histio Warriors and hear their stories has sparked a new flame inside of me. As a nursing student who plans to specialize in pediatric oncology upon graduating, histio Warriors are a source of inspiration for me. They are truly incredible, strong people. I want to help treat and care for these patients in the future.

I also want to offer words of hope to the histio community-

Don’t be afraid to reach out to others- histio Warriors and/or caretakers. Histiocytosis is an emotionally challenging and isolating disease, so support is essential. There are many resources available on the Histiocytosis Association website. I also want to encourage all histio warriors to continue to have hope and never stop reaching for your goals. Although Histiocytosis was a speed bump for me and my family, I believe my experiences in the hospital made me a more empathetic, caring person who strives to live life to the fullest.

Meet Joe

Meet Joe (Histio Angel)

Over the past six and a half years, Joe fought the disease. Knowing this ultra-rare blood cancer could take him at any time, he committed himself to be one of the world’s leading awareness educators and advocates of this histiocytosis disease.

He had been to two continents and numerous states discussing the disease with the world’s leading doctors and educators, patients and caregivers.

Before ECD, he was an author of a book, an award-winning sports information director at the University of Tennessee at Marin and an award-winning editor at the Weakley County Press newspaper.

Joe was a wonderful person inside and out. He loved his role as a histio ambassador and proudly wore his “I Am A Histio Warrior” t-shirt. He was passionate about our mission to raise awareness about histiocytosis shown by his involvement over the past two years.

He exemplified his role as a histio ambassador by leading two ECD Facebook support groups each week, attending our regional meeting in Memphis in 2021, and participating in relay for life day by displaying our histio blue ribbons everywhere. He sold “Soap for Hope” as a fundraiser and last summer organized a histio table at the 2022 Soybean Festival health fair.

He set an example for us all and will be most remembered by us for his genuine care for others, bravery and perseverance, openness, kindness, silly sense of humor and love. Joe’s words emulate the caring nature that he exuded. “I am here for each and every one of you and I will help anybody at any time.”

We will miss you, Joe!

Meet Alena

When Loudon Jack (LJ) was only three weeks old he started breathing very fast. His mother, Alena, a pediatric nurse, brought him to the pediatrician who immediately sent him to the Emergency Room. Initially the Emergency doctors thought it was nothing and sent him home. Over the next few weeks the rapid breathing returned again and again, leading to more emergency room visits, hospital stays, and appointments with specialists. Meanwhile a red spot on LJ’s chest had begun to grow. The pulmonologist thought the red spot and fast breathing may be related and ordered a dermatology consult and a CT scan.

The dermatologist immediately recognized the spot as a Juvenile Xanthogranuloma, a kind of non-Langerhans cell Histiocytosis that is usually confined to the skin, but in 4-10% of cases can cause tumors throughout the body. The CT scan the following week revealed that LJ had many JXG tumors throughout his lungs. Though this news was devastating it was a relief to finally have an answer for LJ’s mysterious symptoms.

LJ was quickly seen by a histiocytosis expert who ordered full body scans to look for further disease. These scans showed that the JXG tumors in his lungs had doubled in size in two weeks and that LJ also had a JXG tumor in his brain and in his spine, threatening the nerves of his spinal cord and legs. A biopsy showed that LJ’s JXG also had aggressive mutations, often associated with other kinds of cancer. LJ started chemotherapy soon after when he was only three months old.

LJ had a total of three years of IV and oral chemotherapy, ending 10 days before his third birthday. During that time, he endured countless scans, surgeries, hospital stays, clinic visits, needle pokes, and side effects of chemotherapy. LJ is now six years old and in first grade. As he runs with his friends and learns how to read, we are so grateful that his histiocytosis was diagnosed and treated relatively quickly, as JXG brain tumors can often cause serious permanent side effects.

When LJ was first diagnosed there were only three documented cases of his kind of systemic JXG, now there are many more reported throughout the literature and doctors continue to learn more about diagnosing and treating these rare Histiocytic disorders. LJ continues to be a trailblazer in all areas, doing things on his own terms, with a love of candy, creatures, and chaos.

Honorary Ambassadors Who have Served

Histiocytosis Association, Inc.

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