May 3, 2012

Yesterday was an emotional day. I'm ecstatic to be at this leg of our our journey. I'm thrilled at how well things have gone. I'm cautious. I'm homesick. I'm tired of white walls and lab coats. I'm also filled with lots of mixed feelings about where we are. I know it's the right place to be, it is just different. I'm usually a fan of different, but this different is filled with a screwed up history of happiness and loss and so many things in between. I have read other parent's accounts of this place. I know what happens here. This place grants you the possibility of a cancer free life, but it comes at a price. Summoning the strength to put your child through what this place asks of you takes something. Maybe that is why it is so rare to have another parent smile at you. If they're here how much is there to smile about? Not that this place is a pit of despair, quite the opposite; it is a place of hope, but it is also a place of hardships.
Life here is just different. Last night when Clayton first started getting sick, I buzzed the nurses station using my "urgent" voice to let them know that my child was throwing up and I needed towels and blankets and zofran ASAP like I was the only one- or at least one of few- going through that. Even as I'm doing it, I remember where I am. Every parent here is going through their worst nightmare. Every parent here is living for the next three weeks or the next ninety days. Every parent here is dealing with a mess of urine collection, stool monitoring and nausea anticipation.
Privacy is a bit of a foreign concept as well. In some ways I guess it doesn't matter because you are all going through the same thing, but in other ways you long for it. This is one of the more intimate times of your life and you have no choice, but to live the highs and the lows out in a melting pot of neuroblastoma families from all over the world. (parents in the unit even have to share two bathrooms) there are not a lot of opportunities for socializing here, but you are definitely never alone.

Someone commented on the blog about a little boy name Liam and his parents and whether I might want to get in touch with his mother. I am very familiar with Liam. I love Liam even though I never met him. I have the utmost admiration for his parents and would love to meet them, but I fear I would crumble at their feet in a flood of tears. Tears for Liam and his journey and his strength, for his mother and her loss and for so many things. For me, Liam's story-the journey not the ending- epitomizes neuroblastoma. His story is the good and the bad, the hope and the heartache that encompass this horrible disease. So often I read his parents words and felt like they had been inside my head. Only their experience was years before mine. I know they are just two of too many parents who have lost a child to this horrid disease, but their words have been with me since the beginning of my journey and I fell in love with their family as I read about their journey.
I would love to meet them one day, but not yet. It's funny how sometimes something you want so badly to do, you just can't. I have a neighbor who lost her son to neuroblastoma more than 20 years ago and though I have known that since right after we were diagnosed, it wasn't until a couple of nights before coming here that I was able to sit down and talk to her. I had wanted to, but I couldn't. Maybe it was fear holding me back...maybe it is fear that is making me say that I would love to meet and talk with Gretchen, but not yet...one day...one day I will be overjoyed to talk with her, but not just yet...

I had one mother tell me not to read any of the stories. That I didn't want to scare myself. Too late. Nah, I knew what she meant. I do read the stories. George will tell you I read them... a lot. Some of them multiple times. You would think I was studying for an exam. In my own way I guess I am. I'm a realist. I like to know things. If I don't know something, I try like hell to learn about it. I don't read these stories thinking our journey will follow the same path as any of those stories, but because I know we will hit some of the same bumps, I want to be prepared. When we go into remission, I want to know what signs to look for in case the disease tries to make a come back. I want to look for trends of when kids relapse. Maybe there will be a time or a sign that it could be smart to do an extra scan. Maybe, the disease never tries to come back. Maybe it does, but none of the signs I have read about present themselves. Or maybe they do. I don't know. I have no control over any of that. But I will be prepared; as much as possible. I can control how prepared I am for whatever may come. So I read these stories and study these cases about these kids, just in case. Just in case the day comes where my knowing their story somehow saves my son's life.