Diagnosis: Multisystem LCH

On May 1, 2013, our son Mac was officially diagnosed with multisystem Langerhans cell histiocytosis (LCH).  At the time of diagnosis, Mac had rashes on his skin, enlarged lymph nodes in his neck, chest, and groin.  He also had a skull lesion on his temporal lobe which would later be determined as a soft-tissue tumor.  He would be turning one in just nine days.  LCH occurs in any age group but most commonly appears in children.  Occurence of LCH in newborns and infants under one year are said to be one in 1-2 million.  At first we were relieved with this diagnosis but it only took a matter of hours before we realized how naive we were being.  All this time, we had been praying that whatever was wreaking havoc on Mac’s body to not be cancer.  Well, it’s not  (technically). We were told “purist” don’t classify LCH as cancer, however, the medical community still remains somewhat divided on the issue.  It is a disease that was thought to be cancer for many, many years.  It acts like cancer–instead of one cell going rogue, it is several cells going rogue and attacks various body systems.  And…it’s treated like cancer.  Bottom line, our 11-month old son would be undergoing chemotherapy in a matter of hours.  And here is where our roller coaster ride begins.

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4 thoughts on “Diagnosis: Multisystem LCH

  1. I am so sorry to hear about this about Mac. I am still praying for you and your family. The Lord is taking care of him. He’s in God’s hand. Holla at me. I am here forever for you and your family.

  2. On May 21, 2013, our four week old son received the diagnosis of LCH. This is frustrating, gut wrenching and just plain horrible. I hate hearing we don’t know…we’re not sure…it depends.

    My thoughts and prayers are with you and your family.

    • Erin, it looks like our little guys are on a closely-timed journey. I hope he handles his battle with strength and courage while you are overwhelmed by peace in such a trying time.

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