When he was born, Cole had some lesions on his body. They were in various places, but mainly on his back. Not very many really - maybe 15 and they are quite small - like a flattened pimple. When the doctors saw this, they immediately started to administer antibiotics and antiviral medicines. Cole was transferred to the newborn ICU (NICU) unit where he was monitored around the clock for 9 days.
After a few days, and a biopsy of the lesion and a couple of blood tests, they were able to determine it was Langer's Cell Hystiocytosis (LCH).
A CT scan of his body was done to see if it was affecting his bones - all clear.
An MRI has been preformed to see if it's in his brain - all clear.
LCH affecting Cole:
- Lungs - clustered together, which is not the normal pattern - don't know if that's good or bad
- Liver - affecting function of liver - Bilirubin levels are high.
- Skin - little pimply like lesions - already going away
Case was reviewed by Kaiser Oncologists as well as one of the world's leading specialists on this disease - Kenneth L. McClain at Texas Children's Hospital.
Case has also been reviewed by the leading bay-area oncologists. Doctors from UC Berkeley, Stanford, Oaklands Children's Hospital and others meet monthly to review special cases and give feedback regarding treatment.
Treatment
Standard treatment has been prescribed. This is the third treatment protocol based on a recently completed study this summer.
Treatment includes:
- Prednisolone - normally a steroid - this is a chemo drug for use here - 2x a day
- Vinblastine - chemo drug - 1x a week
- Sulfa drug to reduce chance of pneumonia
- G-CSF a white blood cell increaser
- Zantac - to help his stomach handle the prednisolone
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