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Navigating the Storm: Our Family's HLH Odyssey, Part 2


The Battle Begins: Chemotherapy and Steroid Treatment

After Phoebe's diagnosis with Hemophagocytic Lymphohistiocytosis (HLH) at Children's National Medical Center, our family's life became a whirlwind of medical procedures, consultations, and treatments. It was a challenging time, but we knew the stakes were high. When we would explain to people that Phoebe had this rare disease, many people would say "at least it's not cancer." They were no doubt well-intentioned by saying that...but we would eventually learn how devastating HLH could be.

Phoebe's treatment began with high-dose chemotherapy and steroid therapy. These aggressive treatments aimed to suppress her overactive immune system, which was attacking her own body. It was heart-wrenching to watch our little girl endure the side effects of chemotherapy, from hair loss to extreme fatigue and nausea. But every moment of discomfort was a step closer to recovery, and Phoebe's resilience was awe-inspiring.

Seeking a Bone Marrow Donor

As we delved deeper into the world of HLH, we learned that a bone marrow transplant was Phoebe's best chance at a cure. However, finding a suitable bone marrow donor is rarely straightforward. To a certain degree this was made more complicated by the fact that Phoebe was adopted, and to our knowledge had no biological siblings. We began working with Be The Match--which manages the US' national bone marrow registry, in an attempt to find a donor match. Phoebe's case became a nationwide campaign, and the outpouring of support from our community and beyond was overwhelming.

Phoebe's journey touched the hearts of many, and she became the face of hope for countless people across the country. So many of our friends, neighbors, and acquaintances put us in touch with churches and volunteered with Be The Match to run swabbing clinics brought an influx of potential donors, not only for Phoebe but for others awaiting a bone marrow transplant. To this day we still hear of people being identified as potential matches from our donor drives. We strongly encourage anyone who is able to swab--you never know who you may help.

It was a humbling experience to see so many strangers come forward, offering to get tested to see if they could be Phoebe's donor match. Their willingness to help was a testament to the power of human kindness and the incredible impact that one child's story could have on the world.

The Heartbreaking Decision: Palliative Care at Home

Despite the immense support and tireless efforts of the medical team, Phoebe's condition continued to deteriorate. Her body was tired from the relentless battle against HLH and the harsh treatments she had endured. It was with heavy hearts that we made the painful decision to transition from curative care to palliative care.

Our primary focus shifted from aggressive treatments to ensuring Phoebe's comfort and quality of life. We wanted her to spend her remaining time surrounded by love and the familiar comforts of home. The transition to palliative care was not easy, but it allowed us to cherish precious moments with our daughter and create lasting memories.



Next...Part III

Our journey with HLH has been a rollercoaster of emotions, from the initial shock of diagnosis to the nationwide campaign for a bone marrow donor and the heartbreaking transition to palliative care. Phoebe's story is a testament to the strength of the human spirit and the power of love and community in the face of adversity. In our third and final part of this series, we'll highlight some of our lessons learned from our experience and the creation of Fight For Phoebe,

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