Ian's histio story

In October 2006 our sweet 15-month old son Ian was diagnosed with Langerhans cell histiocytosis (LCH). He initially presented with a swollen lymph node in his groin and was ultimately diagnosed with the disease in his lymph nodes and scalp, with extensive lesions in his skull, cheek, vertebra, and ribs. His ended up being a particularly persistent case and endured four different treatment protocols over the next 4+ years. He was treated with vinblastine, steroids, methotrexate, 6MP, vincristine, Ara-C, and 2CdA through those different protocols. Ian was treated at Children’s National Medical Center in Washington, DC and the Northern Virginia Pediatric Center for Cancer and Blood Disorders. Finally in April of 2011 Ian was able to have his port removed and we have been thrilled to say that since that time he has had no recurrence of the disease. After Ian’s initial diagnosis we immediately found the Histiocytosis Association and their many resources. From sharing information about the latest treatment protocols, to connecting us with other families with the same diagnosis (this was before social media), the HA gave us much needed hope and support. During that long stretch of treatment we were so grateful to the Association so we held our first fundraiser for the HA in 2008 at our home in Virginia and then in 2010 embarked on hosting Histio Hike Shenandoah. Ian is preparing to graduate in December from the University of New Haven where he is obtaining a degree in Criminal Justice Investigative Services with a minor in National Security. We are so proud of him and so grateful for our histio community and the HA for helping us navigate his histiocytosis journey.

Charlotte's histio story

In the summer of 2024, we noticed a large bump on Charlotte’s head. What we (and her doctors) assumed was a cyst ended up being something much more. After appointments, tests, and a referral to a neurosurgeon, due to the proximity of the mass to her soft spot, Charlotte had surgery in November 2024. The night before Thanksgiving, we received confusing pathology results that didn’t mention a cyst at all, but a clump of histiocytes growing where they shouldn’t have been. The months that followed were filled with visits to Novant Health and St. Jude’s clinic for MRIs, ultrasounds, bloodwork, and x-rays. In January 2025, we finally received a diagnosis: juvenile xanthogranuloma (JXG). We always knew our Charlie was special and didn’t need a rare disorder to prove it. We are incredibly grateful that her diagnosis is benign, knowing that so many histiocytic disorders are not. Our brave girl has faced every appointment, every scan, and even a second surgery in August 2025 with incredible strength. Her doctors thought her JXG was getting more aggressive and felt removal was the best way forward. The plastic surgeon was unable to get clean margins during that second surgery and, because the genetic mutation is one histiocytosis specialists have never seen, we continue to monitor her closely with follow-ups for further regrowth.

Ty's histio story

At eight months, I loved to dance and listen to music. I was fascinated by wheels; I would stare down at the wheels on a stroller instead of enjoying the scenery during walks. I gave the BEST hugs. I also had a large tumor growing on my lung. The mass grew to be so big that I couldn’t breathe on my own and it blocked a major artery. For a month we lived at the hospital while doctors tried to diagnose me. I went through multiple surgeries and procedures, including a blood transfusion, heart surgery, chest surgery, and biopsies of my bone marrow, spine, and the mass. My parents were told after the mass biopsy that the tissue looked like juvenile xanthogranuloma (JXG), but that JXG only appears on the skin, not on internal organs, so they didn't know what I had. For two weeks I needed to be kept sedated and on a breathing machine. Imagine not being able to hold your baby for two weeks. On November 29, 2013, the day after my first Thanksgiving, the doctors told us that they had waited as long as they possibly could and they had to treat me with something even though they risked making me worse. Later that day, I was diagnosed with mediastinal JXG. Yes, the same thing they originally said didn't grow on internal organs. I began chemotherapy. After 12 weeks of weekly chemotherapy and steroids, the mass shrank to almost nothing. I continued chemo for a year. So far, the JXG remains stable. Now, I am 13 years old and like other kids, I love video games, rock climbing, archery, and creating Roblox games. But unlike other kids, I also celebrate milestones like being chemo-free for 11 years and I already have to be monitored for cataract. My parents and I were lucky, so every year, we participate in the Histio Hike to fundraise and spread awareness. Please consider making a donation, so that one day, no Histio family will have to rely on luck.

Stephanie's histio story

Stephanie was born after a full-term pregnancy on January 29, 1992. She had a fever at birth due to exposure to Group B strep but recovered fully and was a healthy infant. In October of that year, she had an ear infection and developed a full body rash. We assumed it was a reaction to the antibiotic, so the doctor changed medication and the rash went away for a while. On Halloween, the rash reappeared on her face and body. She also started running fevers that went up to 105 degrees. We made numerous trips to the pediatrician’s office, and the lab tests showed no clear-cut answers. Stephanie continued to get sicker and had hives all over her body and very high fevers that would come and go at random. Her liver and spleen became enlarged and she became very lethargic. By early December, Stephanie had been admitted to 2 different hospitals with no diagnosis. Finally, she was sent to Johns Hopkins Hospital in Baltimore, MD where she was finally diagnosed with Hemophagocytic Lymphohistiocytosis (HLH) in December 1992. At the age of 10 months, she began an aggressive course of intravenous and intrathecal (into the spinal fluid) chemotherapy which continued until October 1993. She has been in remission since then and has shown no sign of the disease recurring. Stephanie is 34 years old and is in her 3rd year working as a Primary Care Nurse Practitioner in Esmont, VA after working at UVA Hospital as an RN for almost 9 years. There was very little information about HLH at that time, and teaching hospital libraries were the only place where you could read anything about it. In that pre-internet world, we felt very alone and scared. Through the Histiocytosis Association of America we have been able to contact other families who have been affected by HLH and other forms of histiocytosis and realize that we are not alone.

Audrey's histio story

Our daughter, Audrey, was diagnosed with HLH (hemophagocytic lymphohistiocytosis) on November 12th, 2015, only 11 days after her first birthday. After A LOT of bloodwork, it was determined that Audrey had “primary” HLH meaning she had inherited the disease from my husband, Adam, and I and that there had been a “trigger” (virus, illness, etc.) that caused the HLH to suddenly begin attacking her little body. In other words, Audrey’s immune system had been sent into overdrive and was going to kill her if something wasn’t done quickly. We were told that Audrey would need chemotherapy, heavy steroids (plus lots of other medications) as well as a bone marrow transplant to survive. The news was absolutely devastating. Audrey followed the 8-week HLH protocol at our home clinic and hospital in Northern VA, but we knew that when it came time for the actual bone marrow transplant, we wanted to be in Cincinnati with some of the best HLH doctors in the World. We received news on Christmas Eve that they had found a PERFECT bone marrow match for Audrey so, on January 4th, we packed our bags and relocated our family to the Ronald McDonald House of Greater Cincinnati. And, on February 25th, under the direct care of Dr. Michael Jordan, Audrey received her life-saving bone marrow transplant. Audrey spent 35-days inpatient at Cincinnati Children’s Hospital, she was put on protective isolation for 103 days and on June 6th, 2016, Audrey was discharged and allowed to return to our home in Virginia. We just celebrated Audrey’s 10-year transplant anniversary, and we are happy to report that Audrey is a healthy, smart, kind, thriving young woman. In her spare time Audrey likes to ride her pony, Molly, she is the goalie of a field hockey team, and she enjoys reading and writing. We are so very thankful for the love and support of our family, friends and amazing organizations like the Histiocytosis Association.

Anthony's histio story

Thomas Anthony Maurer was our honeymoon souvenir. He was a beautiful ten-pound bouncy baby boy with a full head of hair. His arrival was much anticipated as the last grandchild born on either side of our families had been seven years ago. It seemed as if life couldn’t get any better. So many new and exciting things were happening for us. In a span of nine months, we became husband and wife, bought a house, and had a baby. While away for Thanksgiving in 2007, we noticed Anthony not acting like his usual self. He went from being happy go lucky baby to one that was fussy, wasn’t sleeping well, and began having trouble eating due to difficulty swallowing. Upon our return home, we took him to his pediatrician who noticed that the lymph nodes on the right side of Anthony’s neck were enlarged. She put him on an antibiotic as a precaution and proceeded to run various tests. The results all came back negative, so she referred us onto an ear, nose and throat specialist. By this time, the lymph nodes on the left side of Anthony’s neck also become enlarged. The first thing the ENT doctor did was a needle biopsy on the left side of Anthony’s neck. The results came back as an atypical bacterial infection and Anthony was put on a stronger antibiotic for a month. After the month, the lymph nodes seemed to get smaller. We then proceeded to keep Anthony on the antibiotic for another month. During the second month, the lymph nodes not only became enlarged again but became bigger than they had ever been. At this point, the ENT doctor performed an incisional biopsy on the right side of Anthony’s neck. The results of the biopsy came back with the diagnosis of Langerhans Cell Histiocytosis (LCH). At this point, the ENT doctor referred us onto the Hematology and Oncology Clinic at Nationwide Children’s Hospital. Upon meeting the specialist there, we learned that Anthony would have to undergo even more tests to determine if the disease had spread to any other systems and that the only course of treatment would be chemotherapy and steroids. The results of these tests confirmed that the disease was confined to the lymph nodes in Anthony’s neck and groin. At this point, surgery was scheduled to implant a port-a-catheter into his chest which would be used to administer the chemotherapy treatment. A month after the surgery was performed, chemotherapy began. Anthony underwent chemotherapy and steroid treatment for a year. As of May 2009, we learned that Anthony’s body was disease free. All treatment stopped and surgery was performed to remove his port-a-catheter. December after Anthony went into remission, we welcome Keller and Khloe, his twin brother and sister, to our family. They have been coined with being our remission babies. December 2019, we welcomed a border collie named Oreo to our family and he got us through the pandemic. Anthony has won his battle and has been in remission for sixteen years. However, there are countless others continuing to battle this disease each day and those who have lost their battle and have gone on to become Angels. We wish to support those Warriors, Angels, and their families in response to our good fortune. Anthony is now 18 years old and attends classes at Columbus State Community College and works as a Classroom Teacher’s Aide at Saint Mary’s Catholic School in German Village, a suburb in downtown Columbus, Ohio. He will be working his third season with the Columbus Clippers, the AAA affiliate of the Cleveland Guardians, as a Bat Boy.

Katie's histio story

When Katie was 11 years old, she began having excessive thirst which led to drinking and urinating constantly. After one year of symptoms, Katie was finally diagnosed with Diabetes Insipidus in September 1999. Her endocrinologist ordered an MRI to reveal that Katie had a tumor wrapped around her pituitary gland. Katie underwent a brain biopsy to determine that it was Langerhans Cell Histiocytosis in October 1999. Following the surgery, she received 6 weeks of chemotherapy and prednisone. Her and her family prayed that this was something that Katie would grow out of, and that she would never have a re-occurrence. But it happened. When Katie was 16 years old, she found a lump on her clavicle when she was changing one night for bed. A needle biopsy revealed that the disease was back. It wasn’t only in her clavicle, but also in her lungs and liver. Over the course of her junior and senior year of high school, she underwent a year of chemotherapy and prednisone. In January, she was officially in remission again! Praise the Lord! She went on to attend Georgetown College in the fall following graduation. But at the end of her freshman year, it came back. A lesion was found on her pelvis, and Katie underwent two different surgeries to remove the tumor. Luckily, that was the only location during this occurrence even though she underwent another brain biopsy to determine the pathology of another lesion in the white matter of her brain. It was determined to not be LCH or malignant. This lesion continues to be stable since it was discovered in 2006. Katie did not let these bumps in the road slow her down. She continued at Georgetown College and was able to graduate in four years, and was accepted into graduate school! But another speed bump came along the way. During the spring semester of her Senior year at Georgetown, she began having back pain. A scan revealed a lesion on her T-7 vertebrae, and a biopsy confirmed it was LCH again. More symptoms surfaced revealing a skin lesion as well as a lesion on her jaw bone. While attending her first semester of graduate school, Katie endured 6 months of chemotherapy. Following the treatment, Katie became disease free! And she has been since January 2010 (15 years!!!) Since then, Katie has had multiple scares where reoccurrences seemed to have been certain, but she has remained disease free. Katie is now finishing her 14th school year as a School Psychologist, and she is very dedicated to her job. She stays busy spending time with her fur baby, Winston, and her family and friends. She also enjoys traveling, reading, following her Kentucky Wildcats (GO BIG BLUE), knitting, and puzzles. Through the years of attending Histio events within the Association, Katie has realized she is not in the fight alone. That she is in it with all Histio warriors and families. The bond that exists between those that have been affected by Histio is rare and incomparable.

LJ's histio story

When LJ was a baby, he had a number of mysterious symptoms like fast breathing and a weird bump on his skin. It would take a few months, multiple hospital stays, many scans and surgery to get a diagnosis. At three months old he was diagnosed with a rare and aggressive kind of ALK positive Histiocytosis. He had tumors in his brain, lungs, and spine threatening his ability to walk and breathe. After almost three years of chemotherapy, he had a nearly complete response to treatment! LJ is now in fourth grade- he is creative, clever, charming and has never met a stranger. He loves playing drums, listening to music, watching scary movies, and hanging out with his brother and many friends. His favorite show is The Simpsons and he loves all kinds of candy. He looks forward to the Histio Hike and reconnecting with other Histio warriors and learning more about his story and how Histio continues to affect his life.

Duncan

Deanna

Miles' histio story

My name is Miles and I am 14 years old. I was diagnosed with LCH in January of 2024 at age 12. My experience started with a lot of pain in my hip that kept getting worse and hurt to even walk. After several weeks, an x-ray found a large tumor in the bone marrow of my femur. Doctors first thought I had Ewing’s Sarcoma, but a biopsy revealed it to be Langerhans Cell Histiocytosis. After a ton of additional tests, doctors found that the tumor in my femur was the only one and they believed that it had started to heal itself. Being told that we should just wait without getting any treatment was even more terrifying, but thankfully, I have been one of the lucky ones to have it heal on its own. The experience with LCH was really confusing and scary. In 2024, it was hard to be a normal kid when suffering with a lot of pain and exhaustion. Over the last two years, my health has improved significantly, and I have hit one growth spurt after another. The growing pains with each growth spurt made me and my parents nervous. Is this normal growth pain or is the LCH back? Thankfully, I have hit the two-year mark with no reoccurrence! My parents and I have participated in the Histio walk since 2024 so that we could do something to help others by helping to raise funds for research and awareness. It has also been a great connection source to others with similar experiences. We hope to make it in person someday to meet all of you!

Miles' histio story

My name is Miles and I am 14 years old. I was diagnosed with LCH in January of 2024 at age 12. My experience started with a lot of pain in my hip that kept getting worse and hurt to even walk. After several weeks, an x-ray found a large tumor in the bone marrow of my femur. Doctors first thought I had Ewing’s Sarcoma, but a biopsy revealed it to be Langerhans Cell Histiocytosis. After a ton of additional tests, doctors found that the tumor in my femur was the only one and they believed that it had started to heal itself. Being told that we should just wait without getting any treatment was even more terrifying, but thankfully, I have been one of the lucky ones to have it heal on its own. The experience with LCH was really confusing and scary. In 2024, it was hard to be a normal kid when suffering with a lot of pain and exhaustion. Over the last two years, my health has improved significantly, and I have hit one growth spurt after another. The growing pains with each growth spurt made me and my parents nervous. Is this normal growth pain or is the LCH back? Thankfully, I have hit the two-year mark with no reoccurrence! My parents and I have participated in the Histio walk since 2024 so that we could do something to help others by helping to raise funds for research and awareness. It has also been a great connection source to others with similar experiences. We hope to make it in person someday to meet all of you!

Gwen's histio story

In August 2019, we noticed a bump on our 8-year old Gwen's head. We took her to her pediatrician who could not give us a good enough explanation as to what this could be, so we pushed for further diagnosis. We were so shocked and worried when the diagnosis came back as Eosinophilic Granuloma, a localized form of LCH. We were so grateful for the Histiocytosis Association, a place to turn for resources and information. Because many forms of LCH are rare and not as well researched yet, we felt it imperative to consult with the LCH expert community beyond our city, and work with an Oncologist willing to adapt to the latest possible treatment discussions. We were headed toward a more gentle curettage approach to remove the tumor, however we wanted to get one last opinion from a top local neurosurgeon, and had to wait an extra week to get in to see him. During that time, an incredible thing happened. Gwen's LCH spontaneously regressed. Together with our wonderful oncologist, we were able to find just 19 other documented cases in the world where this has also happened. It was enough evidence to cancel her surgery and put her under observation instead. If it weren't for the delays, we would have subjected her to an invasive surgery involving her skull and brain. We feel incredibly grateful for the doctors that took the time to write up those cases, and we want to be part of more fundraising efforts going forward, to help doctors and families have a better understanding of the many confusing paths this disease can take and offer better, more tailored treatment options to each individual.

Larry's histio story

Our son, Larry Patrick Lam was diagnosed with Langerhans Cell Histiocytosis (LCH) when he was just 3.5 months old. In March of 2023, after noticing a strange rash spreading over his body, we were lucky enough to find an incredible dermatologist who had seen other kids with LCH during her residency at the Cleveland Clinic. Thanks to her good instincts and expertise, Larry's diagnosis was swift and enabled us to travel to Cincinnati Children's Hospital and Medical Center in Ohio, leaders in histiocytic disorders, to pursue ground breaking treatment using gene inhibitors. In Cincinnati, we discovered that in addition to his skin, Larry Patrick also likely had LCH involvement in his liver and lungs. Thanks to his dermatologist in Virginia and the amazing team at Cincinnati, Larry was spared the consequential effects of high risk, multisystem LCH. Larry began treatment at 4.5 months old and his response was immediate with symptoms resolving in a matter of days. This month, we joyfully celebrate one year off treatment and feel enormous gratitude for the team in Cincinnati. Larry is a thriving young boy with the most contagious laugh. He loves swimming, stories, Spiderman, building things, riding his bike, dancing and his little sister, Lillian. We are endlessly proud of our son- of his courage, of his resilience, and most of all, of his joy. Larry is our little warrior and we love him so.