Round #2

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

That Defining Moment.

When you're the mom of a kiddo who has fought a terminal illness, followed by a brain-damaging autoimmune disorder, I am often asked, "At what moment did you know something was wrong?". The simple answer to that is what many other moms in my situation would say. First, there is no moment but a series of moments where your intuition causes you pause. For instance, the teacher might mention, "He's been staring off in the afternoons..." which has the easy answer, "Yes, sorry! We had a late night last night". There are the insignificant times where that little voice says "hmmm" but is quickly quieted by a need to get dinner on the table. In most cases, many moms can't identify one particular moment that caused them to pick up the phone and call the neurologist, oncologist or pediatrician. But at some point there is that quiet break in the action. The realization that things haven't been normal, or have they? It sparks an awareness in a mother to watch every moment, every nuance, every morsel of food that is consumed, and every hour of sleep.

It's often after many days, or even weeks, that the conclusion is made that no, things are "off". The culmination of all those little moments compiled that forces a mom to move as if through water to pick up the phone and say, "Yes, doctor, he could be relapsing".

I picked up the phone today. Through very familiar and raw emotions, staring down a long, dark tunnel ahead, I slowly took the first step toward facing what each of those little moments of pause are telling me.

And this is our defining moment: this is where we pick up the fight, again.

Be The World

What a wonderful holiday season for Comfort Food!

As you all know, despite an unplanned December, our meals are all now resting in the bellies of families fighting critical illness. We were able to stock the freezer at The Cancer Support Center in Blue Ash, leaving our freezer empty (typically that's how I like it!) and felt the generous support of so many over the holidays. From the dear friend who slipped an envelope into my hand after a party...to the donations given as gifts in honor of others...to the unexpected letter and amazing contribution from The Greater Cincinnati Foundation Harmann Fund! All are blessings at a time when needs are going to become even greater as we enter the long, cold days of winter after the warm glow of the holidays.

Because we're a small, and very quiet little organization by design, with that comes a lot of anonymity. We don't often receive letters of thanks, but when we do it's for the meals. To receive a letter of encouragement at a time when I personally needed it most was the bright spot of this holiday season. Following a letter about how a friend participated in one of our events then payed it forward for another family in need, she wrote this:

"We applaud all that you have done. Never be discouraged, as there are so many people, even those you don't realize, that you have helped because of your dedication to others."

As the saying goes: To the world you may be just one person, but to one person you may be the world.

Be the world to someone this year.