In May 2006, when our son Ian was just 11 months old, we noticed a swollen lymph node in his groin that we thought was a hernia. After several months with no answers and watching it wax and wane, a biopsy was finally performed in October 2006. When we received a phone call with the diagnosis of Langerhans cell histiocytosis (LCH), our world changed in an instant. We had entered the world of Rare Disease Land.
Ian, now 16.5 years old, endured nearly 5 years of chemotherapy and steroid treatments while battling this disease. We suffered the heartache of not just that original diagnosis but also three recurrences. However, through it all we had an amazing support group of family, friends, fellow histio families, and the Histiocytosis Association. We continue to be encouraged by amazing doctors who decide to make histiocytosis their life's work and tirelessly search for a cause and a cure. We also remain amazed at the financial generosity of friends and family who know that every single dollar raised for histio research and family support is critical to our lives and those affected by histiocytosis.
After Ian's diagnosis we hosted or attended several fundraising events, and in 2010 we decided we wanted to provide families with a chance to experience the camaraderie that comes from working toward a common cause with those who understand. We chose a hike because we felt the challenge of hiking the mountains of Shenandoah National Park reflected the challenges we were facing with histiocytosis. The peaks and valleys of the histio journey mirrored the vistas and canyons of the park. Our goal was to provide histio families and their loved ones with a place to meet and share their experiences, while also raising much needed funds and raising awareness.
We are thrilled that over the last thirteen years our Histio Hike has brought together 1,555 participants, what a remarkable testament to the dedication and passion of our Histio Warriors, their families, and friends.
Ian is now 11 years post treatment and is doing well, but we remain cautious about his future with this disease and the side effects of so many years of treatment. Our journey fighting LCH has changed us forever and we remain committed to supporting the community that lifted us up during our difficult times. We hope you can join us April 29 - 30 or sponsor a hiker and help us forge a path to a cure for histiocytic disorders.
Tracy, Ryan, and Ian Brown