The song playing on Pandora while writing this:It isn’t uncommon now for Alaina to cry in her sleep every night while on her oral chemotherapy. I think other chemos do it as well, but especially this one. Very similar to night terrors, but not always at night. On Friday in clinic she fell asleep (she was there all day so around 2 finally conked out in my lap). Every five minutes or so she’d start kicking her legs wildly in her sleep and squirming around. Finally, after about 45 minutes, she woke up in a raging tantrum. I’m not sure WHAT she was dreaming but she couldn’t be consoled for several minutes.
Most days we live life like everything is normal. I think we have to, to keep strong, to keep from breaking down, to remain a unit. But it’s moments like these that hit me hard. She’s still just a baby, not even 3 years into her life, yet it’s so easy for all of us, even her, to forget that. We do our normal routines, play like everything is okay, but at the forefront still know and are reminded it isn’t. No 2 ½-year-old should walk into the clinic and know exactly what’s going to happen: stand on the scale to get weighed, stand at the wall to get measured, sit in the big blue chair for an “arm hug” (blood pressure) and temperature; they never have to ask her, she does it automatically now. Then walk to the procedure room, sit on the bed with mommy, hold her shoulders back and be brave while the nurse pokes a needle into her chest to access the port surgically implanted there so she can get her medicine without collapsing veins for all the times she has to do it, then go play in the play room while hooked up to her “robot” the IV machine, and know when it beeps that means the medicine is done, and she’ll have to go back in the room and get her “noodle” taken out (the part they access her with via the needle) and “bandaid” pulled off. All of this she knows, and is so brave now she tells me, “I no cry, mommy. I be brave.” And she doesn’t cry. I look up to her so much, she amazes me.
We can’t go grocery shopping, at least not with her. We don’t go out in public much at all, especially when her counts are low. I freak out every time the girl acts her crazy, wild self, afraid she’s going to hurt herself and we’ll have to rush her to the hospital. Every little bump turns into a horrible bruise, every little scratch bright red and whelpish. When Averie goes to play with friends or any of us go somewhere public and sit for a while on seats we’r e not sure the cleanliness of, we throw our clothes in the wash as soon as we get home, and take showers. And the saddest thing is, Alaina understands now. When I do get a chance to go shopping, she wants to go with me. I say she can’t. She’ll ask why, and we’re at a point now where I can ask her back and she’ll answer, “Because of germs. I sick.” I think my heart cracks a little every time I hear her say something like that. Even at Race Trac, a place we use to go all the time as a family for “special drinks”. We’d go in and let the kids pick their slushees. Now she has to stay in the car with one of us. It won’t always be like this, I know. But it’s still hard. She’s SO little. She could be smaller, yes. It could be worse, I know. But she’s my baby. They all are, Averie and Anderson, too. And the other two are suffering in different ways.
We have a hard road ahead of us the next 8 months, but every day we get through gets us closer to the end of this intensive chemotherapy phase she’s having to endure. After that, treatment will be more spread out; she’ll hopefully be able to go out more. I just have to stay strong and know that God is going to heal her and my baby can proudly where her Survivor T-shirt in 3 years.