January 8th 2018, will be a day that I never forget. It was the day that I was diagnosed with a rare form of cancer called Langerhans Cell Histiocytosis. I had been complaining for months of leg pain to my family, 6 months to be exact. Every doctor my mother took me to ended up blowing us off and gave us some other reason that was causing my leg pain; from vitamin D deficiency, growing pains, to even saying maybe it was just in my head. As months went on, the pain in my left leg got worse and worse and radiated up and down my leg. My pain was now all over my left leg and I couldn't tell where it was coming from. After seeing 4 different orthopedic doctors, repeating multiple lab work and radiology tests, we were fed up. In December of 2017, my mom had had enough and said to the doctor that there needed to be something more we could do, anything else, something we haven't tried. I was given a script to have a bone scan in nuclear medicine. It was that day, that my life changed forever. Once my scan was complete, we patiently waited in radiology for them to print out a CD, only to be interrupted by a radiologist entering the room. He asked that we return to Nuclear Medicine to discuss some things. I could see the look on my moms face; she looked so worried and her face turned white as if she knew what he was going to say. "We found something on Jennas scan, and it doesn't look good!" I could hear the radiologist whispering to my mom in the waiting area. "I've contacted head of pediatric oncology and orthopedics, and we need to get your daughter in for a stat MRI." This was the day my life changed forever. I knew something was wrong, but I didn't completely know or understand what was going on. I spent several weeks after that in the hospital as they ran test after test, and lab after lab, and finally ended my testing with a bone biopsy of my hip. A week later we received the news that I was diagnosed with a rare cancer known as Multi-Focal Langerhans Cell Histiocytosis or LCH of the pelvis and sacrum.
By the time I was diagnosed, the LCH had eaten over 1/3 of the left pelvis causing excruitating pain. I have spent the last 38 weeks in treatment, completing 26 rounds of chemotherapy and ingesting over 6000 mg of Prednisone steroids to help rebuild my bone. I spent several of the first couple months of 2018 in a wheel chair and on crutches due to the extent of damage the LCH has caused to my bones. I spend most of my week doing physical therapy and aquatic therapy in hopes of regaining full strength of my leg and hips. I can only move forward now and hope that no child has to endure what I went through. I tell myself everyday that I am a warrior and that I will always fight hard for those who have no voice. Without the Histiocytosis Association and their research of this rare cancer, we would not have the protocols we currently using for my treatment in place. This is where I need your help. Federal funding for cancer reasearch is limited to 4% for Pediatric Cancer, and within that 4% less than 1% is given to research rare cancers like LCH. These organizations rely on outside funding to help with research in finding a cure for LCH. I need your help. Any and all donations matter. Help me reach my goal of $2500 for funding Histio Research.
Histiocytic disorders are a group of diseases that occur when there is an over-production of white blood cells known as histiocytes that can lead to organ damage and tumor formation. This group is made up of a wide variety of conditions that can affect both children and adults.
While the search for more effective treatments and, ultimately, a cure continues, the Histiocytosis Association is dedicated to supporting and empowering the patients and families who live with these devastating diseases every day.
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