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Navigating the Storm: Our Family's HLH Odyssey, Part 1


Life can take unexpected turns, and sometimes, you find yourself on a path you never could have imagined. That's precisely what happened to our family when our beloved daughter, Phoebe, was diagnosed with a rare and life-threatening condition known as Hemophagocytic Lymphohistiocytosis (HLH). This is the first part of our story, a story of resilience, hope, and the incredible strength that can be found in the most challenging of circumstances.

The Mystery of the High Fever

It all began on a seemingly ordinary day when Phoebe, our vibrant and energetic 8-year-old, developed a persistently high fever. At first, like any concerned parent, we thought it might be a common illness. Phoebe's pediatrician diagnosed her with mononucleosis, a viral infection that often causes fever, fatigue, and sore throat. We followed the doctor's orders, hoping that she would recover in due time.

However, as days turned into a week, Phoebe's fever showed no signs of subsiding. Our worry grew with each passing day, and it was clear that something more serious was at play. She seemed out of sorts and wasn’t herself at all. Concerned for our daughter's well-being, we decided it was time to seek specialized medical attention.

The Journey to Children's National Medical Center

On the Friday before Labor Day, we took Phoebe to our local hospital, where they conducted a battery of tests to determine the cause of her relentless fever. It was a nerve-wracking time, filled with anxiety and uncertainty. When they got anomalous results from these tests, they recommended that Phoebe be transferred to a medical center with more resources and knowledge.

Thus began our journey to Children's National Medical Center in Washington, D.C., a world-renowned institution that specializes in pediatric care. Little did we know that this would become Phoebe's home for the next five months.

The Diagnosis: Hemophagocytic Lymphohistiocytosis (HLH)

At Children's National, Phoebe underwent a battery of tests, including extensive blood work and even a brain exam. It was during this time that we received the shocking and devastating diagnosis - Hemophagocytic Lymphohistiocytosis, or HLH for short. HLH is an exceptionally rare and aggressive immune disorder that can rapidly lead to organ failure and, if left untreated, is often fatal.

To say that our world was turned upside down would be an understatement. HLH is a condition most people have never heard of, and here we were, grappling with the reality of it. Our daughter was fighting a battle we couldn't fully comprehend, but one thing was clear: we had to do everything in our power to help her.


The Treatment: Bone Marrow Transplant

In the coming weeks, we immersed ourselves in learning about HLH and the treatment options available. Our medical team at Children's National explained that the only curative treatment for HLH is a bone marrow transplant, a complex and daunting procedure. This journey had just begun, and it was a path filled with uncertainty, fear, and hope. We began working with Be The Match, the National Bone Marrow Registry, in searching for a bone marrow match.


Join us in Part 2 as we continue our story and explore the complexities of HLH. Together, we hope to raise awareness about this rare disease and inspire hope in the face of adversity.


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