May 6, 2015


Maintenance Day 28: Terrified

Tomorrow is Scarlett’s second round of maintenance. She will get a lumbar puncture with three chemo meds. She will also get IV chemo and start her prednisone burst. She can’t have anything to eat or drink after midnight and her procedure isn’t until 11:30 so I imagine she will start her roid rage a little early. Our little Hulk will most likely return Thursday or Friday.

Scarlett has had a pretty smooth return to life outside the house. I realized how long it had been since she has been anywhere when I ran into Old Navy with her one day. As we walked in the door she went to the child mannequin and held her hand and stroked her arm. I’m not sure that she remembered ever seeing something like that before. I don’t remember the last time we went shopping before she got sick. It’s probably been 10 months or more since she was in a store.

So tomorrow’s return to the office is the first time in 24 days. I am so terrified. I am afraid that her lab work is going to come back irregular. I am afraid that she is going to relapse. I am afraid that we have taken her too many places, seen too many people, gotten too comfortable. I am afraid that, just as we have gotten to the point in treatment that we looked so forward to, we will get bad news. I don’t foresee any time in the future where a doctor’s appointment is just a doctor’s appointment.

Every moment of every day my mind is watching for signs. Every time she falls a couple times in one day, I wonder if she is showing signs of leukemia in her brain. This morning, when our early riser slept until 7:30, I wondered if her hemoglobin level was low. Every time she says her leg hurts, I wonder if her marrow is producing bad cells. My heart skips a beat, my throat catches, my mind wanders. I can’t imagine a day when I will be able to relax.

This is the time in treatment when kids relapse (at least in my mind). I spend a lot of time following families going through childhood cancer. I often find myself at work, sniffling and wiping my eyes so that no one sees me crying. The stories stick with you. I tell myself to stop reading them but they can be heartbreakingly sad and absolutely awe-inspiring at the same time. It’s amazing how smart, brave, and absolutely perceptive these children can be. I am trying so hard to have as much faith as they do. To try to teach and inspire my children too. Childhood cancer sucks but maybe it can make me a better person.

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