Fabric of Life

On September 11th, 2012, we spent a long, stressful day in the ER with our 1-year-old daughter at Primary Children’s Medical Center. After many tests, physician consultations and about 10 hours, she was admitted and transferred to Pediatric ICU and we were told that the various and seemingly unconnected skin conditions we’d been dealing with since she was 2 weeks old were all caused by Langerhans Cell Histiocytosis or LCH.

IMG_0626Jenna9_2012

LCH is a rare disease where a type of white blood cell that normally helps the body fight infection, called Langerhans cells, multiplies and infiltrates various parts of the body causing tumors and damage to organs. In mild cases, only the skin is affected. Our daughter’s is a high-risk case. In addition to her skin being affected, her liver and bone marrow were also infiltrated. When she was admitted to the hospital she was in liver failure and her blood wasn’t clotting.

Jenna spent a month in the Immune Compromised Unit while they started chemotherapy and steroid treatment, and stabilized her liver and blood levels. They also put a PICC line in one of her arms and a feeding tube. When she was finally discharged she had 12 weeks of outpatient therapy. Unfortunately her skin rashes flared around the 10th week of her treatment.

In December they started intense chemotherapy for 3 months. Since then her liver function has declined and they expect she will need a liver transplant in the next couple of years.

Jenna has been in remission since May 2013 and her liver function is stable. You can follow our journey with Jenna by choosing on Fabric of Life in the Tag Cloud or start at the beginning of our journey.

 

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