Thursday, March 13, 2008

5:27 AM 3/13/2008

Good morning. Well, today should be the day. If I am being honest, I have really been dreading today. For me, this week has been all about preparing for today. I have been focusing on making sure Sydney has taken advantage of every moment. What I have come to find is that the last few days have been entirely normal and average. In the afternoons, we have arrived home and headed outside into the backyard. There the little tree huggers head for their little home away from home high above the ground. There they played and delighted. Eventually they would make there way through all of their favorite spots - the fence, the tree, the play house, and the trampoline - all above ground. After we all have had enough fun we would scramble to get dinner finished which was always late due to the fact that we had forgotten about it in all the fun. At dinner their were giggles and laughter. Normalcy of course also required a few tears as tweedledom and tweedledee fought to avoid the vegetables on their plate. After cleanup we made our way upstairs for baths, jammies, and snuggles and we watched a movie - this weeks feature has been Mr. Magorium's Wonder Emporium.

I guess the real point that I am making is that we have spent our time doing what we would do on any average day. I find this incredible and it leaves a warm place in my heart. The fact is that we don't know what our future will hold. For this reason, we wanted to have our children experience some incredible times before we faced the unknown. The best thing we could think of, the thing that we thought we would all love the most, is what we already had. If you ask me, that is a pretty great life. If we could have anything in the world, we would have what we already have. That tells me that we have learned something very important from this journey. For that, I am thankful. Although the concerts, trips, and amusement parks are all very nice; I think we would all prefer to just spend an afternoon together out in the backyard. We are lucky.
For what the rest of today holds I am not so thankful. I don't want to sound all gloomy and doomy. Perhaps I am just trying to protect myself from being devastated but I think Lynley and I have both prepared ourselves as much as one can. I think this is one of the reasons that although we wanted to know the answers we have been content to wait as long as Sydney was healthy and not at risk. To this day, I still have not found or heard a differential diagnosis that has really made me feel much better. I think that has been the damper for me. I honestly don't know what to hope for. Sure I want it to be benign but I just don't know what it could be. Yes, this is the source of my dread. I am hopeful and I am praying. I just haven't found a tangible real answer to alleviate my worst fears. It is a powerless position and perhaps that is why I have focused on my family and our normalcy instead of would would ordinarily be an incapacitating fear.

In the end, this evening we should know something. Although there are no guarantees, the team in Houston certainly felt confidence that they would know something. Have all of our trials and tribulations been because of relapse? Have we been fighting off what we know is probably the inevitable with relapsed neuroblastoma or are we going to be able to celebrate the fact that it was probably never anything at all. Will this tell us anything about our past? Did she relapse in October of 2004? Will she be able to live her life or will she be faced with the same unknown future? Will she play outside or watch it from the window? Today is so full of unfair questions for Sydney. No one's life should come down to this. And yet, the next two years of hers certainly does. Is this the beginning of her life? Is this freedom? Or is it going to be placed on hold again indefinitely?

So much hangs on a single phone call this afternoon. How I would love to let us just play outside in the back yard worry free. I want to give her that again.

Purpose - Prayer - Hope.

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