Trying to get into a new groove .....

Has it only been a week? It feels like a lifetime. Time has taken on a whole new meaning for me. Time now has become a waiting game. Specifically, waiting on Zoey's blood counts. They continue on a downward spiral. Downward spiral in this case, not being a bad thing. Chemo kills the good as well as the bad. Today Zoey's white count was 1.2. Yes folks, by tomorrow Zoey will have just about nothing in her tiny body to help fight infection. Lovely. I have now become more of a germaphobic than before. Is that even possible? I have to say that my biggest fear right now is that Zoey will not be able to fend off yucky stuff before her counts climb back up. Last night I noticed she has a weird cough when she first falls asleep. Only then. Seems like a post nasal drip type thing. Like maybe a cold already. Let us pray that this not the case. Less then 24 hours and her first chemo treatment will be complete. I still have a difficult time writing that. Chemo. The word itself is ugly. The diseases it treats far worse. The 4th floor is a sad place. Doors closed. Protecting fragile bodies from what lies beyond them. Families sitting in a room. Left with their thoughts and feelings. All of us trying, in our own way to figure out how in the world we got there. Focusing on our children. Praying for miracles. Not only for our own but for all these innocent children suffering in ways no one should. Zoey's roommate is a tiny, frail girl named Frieda. She is five and she is terrified each and every time someone enters the room. She screams out, "No Momma, No momma" ...... every time. She absolutely breaks our hearts. Today, when the doctors were in, they had an interpreter and basically, this five year old asked the doctors, herself, what was going to become of her life. Was she going to get better. She had a wisdom about her that NO child should have. She instead should be home playing with dolls, not pondering her life expectancy. Speaking of home, I am home. Mark and I have decided, for now, to do an every other night shift. We will have to see how it works as time goes by. Being home without Zoey continues to be the hardest part. As much as I need to pop home and take care of things here, it is, in many ways easier to just shut out the world when I am down at the hospital. I only wander from the room to use the bathroom and stretch my legs. I always wait until she has fallen asleep. I can't bring myself to leave her when she is awake. It was the same when she was in the NICU. Right before Mark got to the hospital today, she dozed off and I snuck out for a moment. I wandered down the hallway and ran into two moms. We began talking and I seriously fought off the urge to just run away. I stood between the two, one holding a darling one year old little guy. He has neuroblastoma that has spread to his bone marrow. I listened and and glanced back and forth as they spoke and tried once again to try and figure out how it is that I now have become part of a new mom's group, one that finds having a child with cancer, as the common bond. This is our new reality. We will do this, just as we have tackled every other seemingly insurmountable obstacle. I won't like it .... but I'll do it. Because I have to. Because Zoey needs me. I will not let her down, which may require me eating. But you know, food and me are not friends lately. I did manage to get down half a sandwich. I felt horrible afterwards. A week's worth of not eating, will do that to you. Shocks the system I suppose. I once again should try and get to bed early. Or rather earlier, as it is already after 10:30. I still have laundry and a few things to get done before I turn in and quite frankly I dread going up to my room. I miss my husband. I miss my baby. I slept with one of her stuffed animals the other night. It reminded me of her NICU days when I would bring home her tiny baby clothes to wash and I would take a onsie t- shirt to bed with me, just so I could smell her. Zoey had another great day. These pictures show you how absolutely amazing she is. It is as if she says, bring it on, I can take it, watch me. Dig deep princess, rough waters lie ahead but we all have faith in you. We have seen first hand what this child is capable of. Her strength and resiliency are unparalleled. She lights our way through the darkness. Shine bright sweet girl, I feel a bit lost. You lead, I'll follow and God just might have to carry us both.