Hazel was 4 months of age when I first noticed the spots. As a mum you are often hyper vigilant about health, and I pondered the cause… Bites? Chicken pox? Something else? The first doc dismissed it since she had no other symptoms – but as it worsened I became more convinced it was an uncommon rash. By 6 months she underwent a skin biopsy that diagnosed Langerhans Cell Histiocytosis (LCH).
I remember very well the dermatologist saying cautiously ‘it’s not cancer but…’ and my heart aches each time I even think that word. Regardless, LCH has long been considered a cancer because it manifests itself as abnormal cell proliferation, and does respond to chemotherapy. It also has been discussed as an immune disorder, because it doesn’t ‘behave’ like most cancers – sometimes spontaneously healing.
Langerhans Cells are a type of white blood cell, hence are involved in our immune response. When they multiply in LCH, they can cause damage in many parts of the body – skin, bone, organs and even the brain. Effecting anyone but more rare in babies, our girl is literally one in a million. It’s unknown whether she will require chemo or surgery as the path of the disease is highly unpredictable. She has monthly oncology visits and tests 3 monthly or more, and so far only her skin is mildly effected.
It’s a frightening journey that we must take day by day, like so many others sharing their stories here. I wish to leave you with this: Please trust your instincts – little harm is done if you are wrong in any health concerns, but early diagnosis may save a life. X