We never thought we'd be back in this spot with our little man. Nobody ever does. My husband said it best this morning, "We knew relapse was always a possibility. We never contemplated it would actually happen, though." It's very empowering to fight - and think you've beaten - a critical illness. You never want to think about having to do it again. You focus on picking up the pieces of your life, putting them all back together in their new semblance of order, and you learn to live life again without looking over your shoulder for that dragon chasing you.
Relapse is insidious, but the small little advantage we have over it is that now we know how to protect ourselves. We know what the dragon is going to do next and who to call for reinforcements. We welcome round #2.
Ding. Ding.
Auggie will go in for an MRI this Monday to rule out cancer, which is a high likelihood. He began heavy dose steroids to tame the attack his immune system is waging on his brain thinking it's a tumor. He will go in for IVIG on Friday to boost his immune system, and if his MRIs come back positive for cancer, we'll head down the hallway to chemotherapy. Below are links to explain all these terms, so please feel free to research at will. With 1 person in every 10,000,000 being diagnosed with it, feel lucky to know Auggie!
Our first battle with OMS began when he was 16 months old with flu-like symptoms and severe opsoclonus (his eyes jiggled erratically) and ataxia (he lost the ability to walk). Developmentally he remained intact. This go-round, Auggie is physically fine but has moderate dysphasia, short term memory loss and mild tremors. I liken it to living with a sub-four foot person with alzheimers. He is full of humor, mischief and life, but can't remember the day, how to get dressed or what he had for breakfast...a half hour ago.
We've lost Auggie before and brought him back. We'll do it again. Go away dragon.
http://en.wikipedia.org/wiki/Opsoclonus_myoclonus_syndrome
http://en.wikipedia.org/wiki/Intravenous_immunoglobulin
individualandfamilies/health-and-well-being/hw/medical-topics/opsoclonus-myoclonus-syndrome-nord679.html