My little girl has LCH

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My daughter has had these lumps come up on her head since he was under-year-old lumps come and then disappear and then come back in different areas on her head.

I’ve been to see so many different doctors consultants and lots of trips to A& E. She’s had ultrasounds done x-rays of her head and she is an MRI scans lots of blood tests.  

she’s just over 2 1/2 we seen a consultant at Birmingham Children’s Hospital he is 99% sure it’s a very rare form of cancer called LCH for short.
 I was just wondering if anybody else has heard of this rare form of cancer or has had a child with it 

i’m still waiting on the biopsy results to come back it’s been over two weeks now. I’m expecting the phone call tomorrow following my daughters MRI scan to see if it’s spread anywhere else.