PATIENTS & FAMILIES

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 7-year transplant anniversary and we are happy to report that Audrey is a smart, kind, thriving little girl. In her spare time Audrey likes to ride her pony, Molly, she is on two swim teams that compete year-round, and she enjoys reading and writing. We still return to Cincinnati Children’s Hospital once a year for check-ups with her hematologist, but Audrey is no longer on any medications, she no longer requires occupational or physical therapy, and she is a happy and healthy kiddo!

CJ began showing symptoms at 7 weeks old when he developed a very high fever that lasted a week. After admission to our local hospital and a full work-up of tests that all yielded negative results, we were sent home. His fever subsided but returned a few weeks later. This was all happening during Covid quarantine, and no one in our house was sick, so it seemed especially odd that a virus would be causing his extremely high fever. On day 5 of his second fever, and after he had grown a bit lethargic, we decided to take him to Children’s Hospital of Philadelphia. It was there that they discovered his blood counts to be dangerously low and his liver and spleen to be enlarged. We were admitted to CHOP and began to undergo testing for leukemia. When that came back negative, they began to suspect HLH, but after a few days of fluids his fever broke and his counts came up, so they discharged us with a follow-up in their outpatient clinic a week later. When we returned, his counts had plummeted again and his heart rate was over 200 bpm, so they admitted us for further testing. He was on the verge of another flare. After a barrage of tests over the next 10 days, they diagnosed him with primary HLH and began treatment. Thankfully he responded well to the steroid and chemo regimen, bringing his HLH flare under control. We soon learned that his only sister was a 14 out of 14 match and would be the donor for his bone marrow transplant. He was 5 months old when he had his transplant. With very few complications, he is now fully re-immunized and living his life as a 3 year old. We know how incredibly blessed we are and have since dedicated ourselves to helping others with this fight.

One of the greatest ways we can do this is by helping doctors to learn more about HLH and the effects of treatment, so that they are able to make advancements in treatment options and save more lives!

Easton was born a healthy, full term baby in Feb. 2022. It wasn’t until he was 3 months old when he spiked his first fever in May. This fever broke on its own within 3 days so we chalked it up to a virus. The same thing happened again in June. Finally in July after his 3rd consecutive fever, I decided to take him to our local children’s hospital to get bloodwork to ease my mind. Unfortunately to my surprise, his lab work came back giving me anything but reassurance. All his blood counts were extremely low. The resident in the ER also noticed his spleen was enlarged. After many, many, scans, biopsies, spinal taps, and ultrasounds, they had a high suspicion of Acute Lymphoblastic Leukemia (ALL). We were devastated. After the last biopsy to confirm ALL, they concluded it was no longer a cancer. We were back to square one and sent home with no answers except a possible “fluke”. Shortly after being home, Easton spiked yet another fever. We were admitted again. After a 2 week hospitalization, they came to the clinical diagnosis of Hemophagocytic Lymphohistiocytosis (HLH). He was started on a steroid called dexamethasone. After the genetic confirmation of familial HLH, we transferred care to the HLH center of excellence in Cincinnati, OH. Easton was transplanted In Cincinnati in January of 2023 at 11 months old. He had a haploidentical transplant from his father’s bone marrow. Besides a short ICU stay due to fluid retention & low oxygen levels, Easton has had an overall uncomplicated transplant. He is now considered cured of his HLH.

Despite being born in a pandemic, Jack and our family lived a very normal first two months of his life. Jack was your typical newborn, that occasionally had to go on stroller walks at night to help soothe him. In late September of 2020, Jack went into the hospital at Cardinal Glennon in St. Louis, MO as he was having high fevers. After every test imaginable came back negative, the doctors thought it was something viral and sent us home a few days later, thinking it would pass.

Our world was rocked when Jack had to return to the hospital for high fevers when he was three months old. They discovered his spleen was double the size it should be. Doctors speculated that Jack either had HLH or Leukemia and was admitted right away. Jack was diagnosed with HLH, in October 2020 and would need a bone marrow transplant. Jack stayed at Cardinal Glennon until late November of 2020 and then took his first flight to Cincinnati (Children’s Hospital), where doctors specialize in HLH.

Jack was allowed to go outpatient for several weeks before he had his bone marrow transplant in early January. His body accepted the transplant, but due to breathing difficulties Jack had to be intubated and sent to the PICU. After a long time of having the breathing tube in, Jack started to get better and was able to be extubated. Jack was making great strides, when at times we noticed his breathing was labored. Two weeks after being extubated, and almost being released from the PICU, Jack had to be intubated for a second time. The doctors were not sure if it was adenovirus or something else causing the breathing issues. On 3.10.2021, Jack passed with his mom and dad by his side. There is no strongly effective treatment for adenovirus post-transplant, which is why Jack's family continues to fight and raise awareness about HLH.

She was diagnosed with Systemic Juvenile Idiopathic Arthritis (SJIA) in July of 2020 at Boston Children's Hospital, several months shy of her second birthday. Because of the great care that she received, she was able to get diagnosed a week after admission, which is a significantly faster experience than most SJIA kids. Due to the speed of diagnosis, she was only "approaching" macrophage activation syndrome (MAS), a form of secondary HLH; the quick treatment response spared her and she only reached sub-clinical MAS.

For many children, the first years of SJIA are the most challenging, as care teams must work to discover the most effective treatment/combination for each individual. The same was true for Sam. In the spring of 2021 at the age of two, Sam was hospitalized for two months, and in the ICU for three of those weeks. She experienced full-fledged MAS (a form of secondary HLH). She was successfully treated has since been on a stable regimen of medications that has been able to keep her out of the hospital.

It’s not uncommon for kids with SJIA to have first been misdiagnosed with primary HLH, but it’s important to understand the difference to ensure proper SJIA treatment post MAS.

Liam was our first-born child and our little "powerful warrior", the meaning of his name. He passed away in my arms at only 20 months old from complications post bone marrow transplant for HLH, just 6 months after his treatment began. He started showing signs and symptoms of HLH at 4 months old but not one doctor could give us a diagnosis. We were told countless times, "It's just a virus." For 10 months, we watched our son suffer as he was dying right in front of our eyes. Even a pediatric oncologist/hematologist could not tell us what was wrong along with four other specialists. After a very long and frustrating journey to find the truth, Liam was finally diagnosed with HLH on March 26, 2009 at The Children’s Hospital in Aurora, CO. We decided to transfer his care to a hospital that specializes in this disease, Cincinnati Children’s. We did not want to have any regrets and were willing to do whatever it took to get him the best care possible. Unfortunately, the odds were not in his favor due to late diagnosis and not having a bone marrow match out of 13 million people on the national and international registry. This significantly delayed his treatment protocol ultimately leading to more complications going into transplant. Liam received his cord blood transplant on July 30, 2009 and passed away 41 days later in my arms. This disease is so harsh and so unpredictable. We were told it’s either HLH or cancer and to pray it was cancer.

I have been through life’s most unspeakable journey, losing my child. Instead of shutting down and wallowing in self-pity or striking out against uncontrollable forces, I have chosen to continue Liam’s fight. I fought for my son since he started showing symptoms at 4 months old, throughout his 10 months without a diagnosis, and for the remaining 6 months of his life after his diagnosis. I am pushed by his memory to continue his journey against HLH. I have spent countless hours working on the foundation in his name. This path is not something I chose, but one I can’t escape.

I am just a mom with a dream of changing the outcome for HLH patients and honoring my son’s fight by doing so.

Liam’s Lighthouse Foundation became official on January 18, 2010. (LLF), a non-profit, tax- exempt organization, was established to create and provide educational material and awareness about Hemophagocytic Lymphohistiocytosis (HLH) including Histiocytic Disorders, and to distribute unbiased, factual information to physicians, hospitals, and the community regarding this disease. Our focus is also to bring families affected by HLH/Histiocytosis together and offer support through a variety of resources. We aim at raising much needed funds for continued education of physicians and research to develop safer and more effective treatment methods and ultimately a cure. LLF is also dedicated to bring awareness to the community about the importance of becoming a blood and bone marrow donor.

When Mia was 8 weeks old, her parents took her into the ER with a high fever. After countless tests, bloodwork, and a bone marrow biopsy her doctors finally diagnosed her with Hemophagocytic Lymphohistiocytosis. She immediately started chemotherapy and high dose steroids the next day. She went through several rounds of chemo and medications before finally getting her stem cell transplant at 4 months old.

Mia is now a 9 year old little girl. She loves to play jokes on people and make people laugh. Although she has had some setbacks and complications from her transplant she never lets things stop her from what she wants to do. She is a fighter, and we will continue to fight for awareness for the disease that almost took her life.