Wednesday, February 10, 2010

WHEN THE INTERNET BECOMES YOUR WORST ENEMY (6 to 8 weeks)


I came home from the hospital with the name of the disease written on a sticker. “Juvenile Xanthogranuloma”, I could not even pronounce the stupid word. I looked it up online and there it was, sure the spots that these kids had were like my Santi’s. It had to be this condition. Surprisingly, there was not tons of websites that popped up right away with clear or easy to understand language, but all of them were in the lines of what our dermatologist told us. Still in my auto-pilot mode, I emailed the news to my husband and parents in-laws and I added some JXG basic websites. Now, many months later, reading that email, I see how naive I was. The “happy go lucky” tone and the minimization of what happened show how powerful denial can be. In the following days, my husband and I surfed the web intensely and discovered that JXG has two types of manifestations: 1) a cutaneous (skin) one, mostly benign and that regresses by itself. Nevertheless, in very few occasions, it can develop in the eye or internal organs in which cases surgery or chemotherapy are required and 2) Systemic JXG, that can present in the brain, liver, kidney, marrow bone and /or longs, and it could be associated with leukemia. This form of JXG has a risk of mortality and not always presents skin lesions. The stories that you find online about babies and parents fighting this disease are just heartbreaking (please read Sydney Salem Golding’s story: http://www.sydneyfund.org). I cried myself to sleep many nights and during the days, I would go to the bathroom to sob quietly thus my baby could not hear me. The last thing I wanted was to transfer my anguish to Santiago. My husband was amazing, always trying to keep me grounded in the present and reminding me that we did not have a proven diagnoses yet. He eventually learnt that whether I had a confirmed label for my baby’s spot or not, the only thing he could do was to hold me and kiss me until I calmed down. This WAS NOT how I imagine spending the 2nd month of the life of my child and I felt that we, specially my little angel, did not deserve to be in this situation. Oh gosh, how angry I was!

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