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April 17th, 2009, 04:53 PM
Join Date: Apr 2005
Location: Anaheim, CA
Joey has Langerhans Cell Histiocytosis, which is a disease of the blood/immune system. His involvement includes skin, lungs, liver, and ears. He was diagnosed after 4 MONTHS of symptoms ignored by his doctor when we discovered a mass in his throat. There is no "universal treatment" for LCH. For kids with skin only treatment can sometimes be avoided, but ionvolvement other than skin is treated either with surgery to remove mass or with chemo, depending on where involvement is and how many systems are involved. LCH can affect the skin, liver, lungs, bones, spleen, Central nervous system, GI tract, really just about anything.
Joey's primary tumor is a "mediastinal mass", meaning in the chest, and had wrapped around his airway, displaced his heart, wrapped around all his major arteries and veins. He has been treated with Chemotherapy and is currently on modified maintenance. He still has a small mass left in his chest near his heart.
The reactivation rate for LCH kids depends on the level of involvement and areas involved. I believe Joey's chance of a reactivation is 50% but it could be as low as 35%. many kids with LCH also develop Diabetes Insipidus, developmental delays, learning disabilities, and a variet of other possible issues. Something as simple as a diaper rash or a headache could mean LCH is back and has to be checked out. Joey will need CT scans every 3 months for at least 1 yr post-chemo, every 6 months for another year, and then yearly for his lifetime. Also any indication of a recurrence reults in more CT scans.
Melanie has some speech delays caused by "probable hearing loss" that seems to have corrected with steroids for 2 months. She was never cooperative for the second hearing test so they marked it as probable hearing loss in one ear. now however she is extremely sensitive to noise and if we raise our voice even a hair she plugs her ears and cries "too loud mommy". Not really sure what all is going on with her. We are also having her checked because she is constantly thirsty and hungry and nothing seems to work and no matter how much she eats and drinks, she has lost 4 lbs in 3 weeks.
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