Wednesday, April 3, 2013

Freaking Decitabine, work already!!!!

This week has been crazy, as have been the last couple of weeks/months/years, depending on when you start counting, and I don't even know where to begin, so I guess I'll just dive right in and trust you'll forgive me if it doesn't make any sense.

Healthwise, Sarah's counts have been steadily climbing, and it seems that now that we have hauled out the big guns and given her more decitabine early, her cancer has decided to fight back with a vengeance. Her white cells went from normal to slightly high, to !!!! to WTF? Seriously??? in a matter of days. Normal white cell count is between 4 and 10. She has been riding the 60's all week, and today, day 3 of decitabine, she was in the 80's. Her doctor, our beloved Dr. Horvath, told me not to worry, as she always does, but I can see the worry in her own eyes, the determination to figure something out to keep this little girl here because she wants to win this fight as much as we all do. All of the doctors have told me that while she has been feeling pretty well for awhile, they don't know how long we can keep this up, and really, all we're doing is trying to buy her more good days. Which she has gotten, thankfully, but with white counts that dangerously high, there is that nagging thought in the back of my mind. Are we here? Is this it? I wouldn't hospitalize her if that were the case, I know my daughter, she'd rather be home, but is this where we are? Am I about to lose the one thing I have left?

I close my eyes, and I pray, pray for God to keep her here, pray for God to give me strength to get through this because my own seemingly bulletproof facade is waning. She looks so good. She seems to feel good. She's eating, laughing, playing. I don't understand. Her doctors don't understand. There isn't much they can tell me, other than that we are doing the best we can, and they don't know how long we can keep this up. They tell me to be strong, to have faith, to call with any questions. Dr. Horvath checks her labs from home on her day off and brings my baby flowers from her garden that make her smile. I know these are the best doctors and nurses we could ask for. I know they love her almost as much as I do, and would and have gone above and beyond to keep her safe and happy. My mother's instinct still feels her here, distinctly. I do not feel her pulling away from me. So why am I scared shitless?

I'm scared because numbers are numbers and math has never been my friend. I'm scared because everyone keeps telling me that cancer feeds on sugar and I need to cut it out of her diet, but when my child asks me for a candy bar, and her doctors are telling me they don't know when the last day might be, I don't want to spend eternity kicking myself over a damned Hershey bar. She doesn't get to go to school, or play in the park, or attend birthday parties like normal kids. You want me to slap the cookies out of her hand, too, when all she wants is some semblance of a normal childhood? I know that people mean well, I know they truly have her best interests at heart, but the way I see it, if I can authorize people to poke and prod and cut and pump her full of poison in order to save her life, if she has suffered all of this shit with a smile since she was not even TWO, then let the child eat her fucking Hershey bar in peace. This shit started before she'd even had her first lollipop. I weed it out where I can, but my philosophy is balance. Too much of anything is never good. But telling a cancer mom that she should deny sugar and carbs (which convert to sugar in the body) to her already underweight FIVE YEAR OLD, and that unless she does she is sealing her fate, is tantamount to blaming her cancer and her subsequent possible demise on me. Not cool. (P.S. I have heard the sugar thing from several people, but the person that pissed me off doesn't read this blog, so if you are reading this, don't worry, it wasn't you! lol)

I am trying like hell to just keep my head in the game, trying to control my own frustrations and keep from taking them out on my daughter, because if these truly are our final days, I don't want them to be spent with me yelling at her. I know that if she doesn't make it, I will regret it always. So I hold her close. I read when she asks me to. I kiss her cheeks and play with her as much as I can. I watch her sleep and I pray through my tears that somehow, someway, God will let her stay, because there is nothing else to do. I don't understand this, and I am barely holding on, but I know that HE does, so I have to trust that He knows what He's doing.

More than anything, I have to put on a brave front for my daughter. She worries about me, more than she should. That breaks my heart, but it's true. Today, she saw the worry on my face as I was overlooking the lab sheet, heard me sigh while she played on the floor, and she said, "What? What is it?" I told her that her white cells were climbing too high, and she got scared and asked what would happen to her. I lightened my face, smiled and told her that nothing would happen, that everything would be fine, and I have to believe that one way or another it will be. If this is it, I don't want her to spend the time worrying about something we can't fix. I don't want her to be scared. I am scared enough for us both. This is the loneliest feeling in the world, but I want her to know that she has a world full of people on her side. All we can do is pray that tomorrow brings us better news, and that some miracle will save her life.

And, I could take a few cues from her, you know? Worry only about what outfit I'll wear tomorrow, which Lalaloopsies we'll take to OPI and make poor Mitzy, Paul and Marie earn their paychecks! What should we take for lunch, and what kind of surprise will Dr,. Horvath bring? You know, the important things.

After a long day of decitabine and a port flush, Sarah got a bubble set from the Child Life closet as a prize for being good through her port flush. All she talked about the whole way home was blowing bubbles on the porch. Luckily, there was just enough daylight left when we pulled into the driveway to blow a few bubbles. We sat on the porch, she ran around and blew bubbles at all the cars, laughed when they popped on tree branches or on me. She plucked flowers from the bushes and put them in my hair, I tucked a stem behind her ear. "Let's spread happiness, Momma!" she cried as she spun around in a circle, bubble wand extended. I took picture after picture as the sun set. I didn't want to forget her like this, she will not be this child forever. It takes so little to make her happy, which is ironically why she's so spoiled and has enough toys for ten children. She gets excited when we come home from the grocery store. Thousands of dollars worth of toys inside the house and out, and some soap and flowers is all it takes to make her smile that genuine smile I rarely get to capture on film since she adopted that fake, wild-eyed creepy grin kids get in photos around this age. For awhile, I forgot about her counts. I focused on my child, on her happiness, and that was all that mattered. It is all that matters, the two of us, together.

1 comment:

  1. Our thoughts and prayers are with you both. Keep strong.