Kaylee was diagnosed with a stage III favorable Wilms Tumor in June 2011. Wilms is a childhood kidney cancer that affects abt 600 kids in North America a year. She finished 6 months of treatment including surgery, chemotherapy, and radiation. In June of 2012 we found a recurrence in her lung through a routine CT scan, and are now starting the process over again. Although always a little behind, this blog is to document her story, for her, to remember the trials and blessings that have come from her diagnosis, and so she always knows what a brave little girl she is.

Monday, July 4, 2011

Recovery

You are my big girl.  Even when you were a baby, you were my big girl.  That's how it is with the oldest.  We parent's are always watching you grow up so fast, and pushing you towards that next goal.  We don't realize, with the oldest, how fast it all goes.  We brag about how our kids do this thing or that so young. We glow in how advanced they must look to everyone else. We don't think about the clock.  We don't think how years roll along faster than a wave across the ocean.  But while you were recovering, I couldn't help but enjoy all the little steps I got to watch you do again.  Everything was just as exciting as the first day you did them.  The nurses and I stood over you waiting with baited breath at you lying there, hot and still as a southern summer night, to hear you utter your first words. In a raspy voice you wispered, "They told me I woudn't be hungry."  We all laughed, and I couldn't help but beam at how aware you were, and how advanced that must be.  We parents never change.  I knew you would recover like a champ.
You had been so shy in the hospital, but your drug-induced personality was different.  You were content, but direct.  If you needed something, you asked a nurse.  I was no longer the middle man for communication. 
You kept your arms limp, like over cooked noodles, by your side.  If I reminded you that your arms were okay, you would try it out, but not for long.  You rarely smiled, but would pose for a picture when we asked.  It was fun to see your little personality shine through the pain medicine every so often. I couldn't be upset at all the meds, even if it kept us from our bubbly Kaylee for a few days.

People brought presents and your eyes would light up, but you didn't have the energy to open it. You drifted in and out of sleep, for what seemed like a long time.  Then, the day after surgery, you woke up with a bit of energy and wanted to get out of your bed.  The nurse suggested you sit in a chair.  We scooted one close.  It hurt to move. Your body didn't work the way it used to.  I could see frustration set in your brows as the nurses lifted you out of the bed.  That is when you realized that surgery was harder than just missing ice cream on your birthday.   Everything was so much work! There were tubes coming from your back, and chest, and nose and wrists.  They wanted to make sure they knew everything your little body was doing. You hated those cords and tubes.   They were hard to keep straight.  It took nearly 15 minutes just to get from your bed to a chair.  Only two steps.  Once you were in the chair, all that hard work, and a lot of pain medicine, made you very sleepy.  You sat there slumped over, like an old lady in a nursing home, quiet and frail. Once you were back in your bed, you slept and slept and slept, just like a new baby after a good cry.


With passing day, your recovery sped up exponentially.  The next day, you rode in a wheel chair, and even wanted to roll the wheels yourself for a bit.  Later that night, you pulled out your NG tube (a tube that went in your nose down your throat and into your stomach) in your sleep.  Later, you pulled off your oxygen.  It was busy in your room that night with all those alarms going off and nurses coming in. The nurses got a kick out of your determination. They took those tubes away for good. Daddy and I wondered if this was the quickest anyone has every recovered from a kidney removal. We loved seeing our spunky little Kaylee girl come to life again.  The fourth day after surgery I left the room and came back startled to find an empty bed.  I thought those pit-in-my-stomach days were over.  But it crept back to it's familiar spot again, for a moment.  I scanned the room and found you kneeling on the couch, playing with some of the gifts you had gotten!  I loved to see you feeling better.  It was nice to have the clock reverse for some time, but I had missed my big Kaylee girl. I sat next to you and we colored in fresh coloring books with sharp crayons.  I didn't feel my stomach get lighter though.  A new realization came to me, as that pit grew deeper in my gut. Surgery was just one hurdle to jump.  We still needed test results from the surgery, and you still didn't know there was more.  So much more. You wouldn't get to go home and have the normal summer you had been looking forward to all school year.  And you didn't know.  The doctor thought that was best. I did too.  It's hard to climb a mountain in one jump. Too overwhelming to do it any other way than just putting one foot in front of the other.  We didn't need to push forward any faster. We were learning to slow down and take things one day at a time.

1 comment:

  1. Way to go, Kaylee girl. You are a shining example to us grown-ups. Kim and Seth, you're amazing. Thank you for keeping us posted. Our hearts go out to you.

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