At 9 months of age, Kadence began getting re-occurring ear infections and would spike high temperatures then be fine a few hours later. We started noticing that her left ear was sticking out she would pull at it and scream out in pain. We continued hearing from doctor’s that she had “ear infections” or “lymph node infections.” Finally at 13 months, I told her doctor that there was something seriously wrong and condemned something be done. A CT-Scan was ordered.
After seeing what was described as “a large mass too big to be anything other than an infection of the mastoid,” we were put on an ambulance & sent 2 1/2 hours away to Riley Hospital for Children. After a series of scans and many labs, doctors told us that Kadence had a large tumor on her skull and they would need to do surgery immediately to see what it was.
After what seemed like hours, an oncologist came out to tell us they found Langerhan’s cell Histiocytosis (LCH). Langerhans cell Histiocytosis (LCH) is a rare disease involving clonal proliferation of Langerhans cells, abnormal cells deriving from bone marrow and capable of migrating from skin to lymph nodes. Clinically, its manifestations range from isolated bone lesions to multisystem disease.
LCH is part of a group of clinical syndromes called histiocytoses, which are characterized by an abnormal proliferation of histiocytes (an archaic term for activated dendritic cells and macrophages). These diseases are related to other forms of abnormal proliferation of white blood cells, such as leukemias and lymphomas.
Kadence would need to start chemotherapy right away and have another surgery to place a port. This is when our journey with fighting a rare disease began. It was decided that Kadence also had LCH involvement in her skin. She had horrible cradle cap and weird rashes since birth.
Kadence underwent six months of chemo with great results and surgery was scheduled to remove her port. The one night after a bath I noticed a red swollen area that I knew all too well. We started another course of chemo the next day. For 9 months, there was no change in the size of the tumor on her skull.
After switching to her 3rd protocol, we started getting positive results and lots of chemo side effects …..but she was beating LCH. After two years and two months of chemo, Kadence finally had clear scans!
Today, Kadence is four years old she is one year post chemo and doing great. We still know that any day LCH could show up again but we have learned as a family to not sweat the small stuff.