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.

Saturday, June 25, 2011

The Waitportal

Walking into that waitportal room was like being handed a dinner plate filled with mashed potatoes, cauliflower, and chicken. Even if you like all those things separately, when you see them together on a white plate you would almost beg for brussel sprouts just to add some color.  It was a big white mush. We weren't sure how long we were going to be there, but those white walls and hospital beds and floors were too bland.  You noticed it too. It was stuck in our throats, as we tried to get this first dry bite digested.  The first splash of color arrived before we'd even sat on the bed.  A knock at the door and a lady I've never seen, and whom I was sure was lost, stood baring gifts packaged in pinks, purples and turquoise.  She had a bunch of balloons bobbing above her head.  How excited you were to find out she was looking for you!  Two gifts, one from your aunt and uncle and one from Grandma and Grandpa, were in hand!  Oh, how those gifts made it all so much easier to swallow! You wondered how your cousins knew you were in the hospital.  You wondered how Grandma and Grandpa were able to get a package all the way from Greece here so fast.  You wondered the different ways that gift crossed the vast ocean while playing with the teddy bear and tying your balloons to your bed. 
You had a hard time getting rid of that pretty packaging. It couldn't just be destined for the trash when it saved us from drowning in our sea of white. You had big ideas. You directed me in the ways we could use the tissue paper to liven up the bed.  I gave you some ideas too.  We put our ideas together, and made a bed fit for a princess.  You drew a picture of me and you holding hands on a sunny day. We added it to the bed.  Our warm sunshine, you, and me.  No needles, or masks, or medicine.   It was complete. You were ready to stay a few days now.  I was ready too.
It wasn't long before a few more gifts arrived.  You were thinking, this was going to be pretty good.  I was grateful for the distraction.  That room looked better and better with each passing minute.

We got Reese's quarters set up. .  . a playpen in the corner of the room.  She didn't like it very much.  She was fun to have around.  She kept things light.  But man, did she want her dark quiet room when nap time hit! Waitportals are no place for tired babies.


We all crowded in that room, not wanting to leave until we had a plan.  I think our room was fuller than anyones!  People were everywhere!  There wasn't a space for all of us.  So, when we needed to sleep sometimes I squeezed on a tiny couch with daddy. Sometimes you wanted me to snuggle in your bed with you.  I really didn't need much sleep, so it didn't matter where I squished myself.  I liked just laying next to you and holding you close remembering the time when you were too little to be too far from me.  Those days when you were cradled in my arms and didn't want to leave there.  Those days before you were too big to know that you didn't need to hold my hand.  I breathed you in like I did when you were tiny and round and soft.  I let your hair catch my tears.  It was nice to know you aren't too big to have me hold you without trying to wriggle free.  I liked waiting all squished together.  It was warmer that way.  It was simple. It was more like home.

Someone sure was thinking when they made this waitportal for kids.  They must've known how much waiting everyone would have to do, so they put lots of fun things in there to make the waiting funner.  There were playgrounds to run in, playrooms filled with games, schoolrooms where artists would visit, gardens to stroll through, xbox's with games delivered bedside, and people who would bring dogs to visit.  One lady brought a dog that had a feather in it's hair, just like a person.  She told you she liked to go out with their feathers and sunglasses and go on walks.  People liked watching those fashionistas out on the town.   
They showed you how you could control everything around you from a little computer screen next to your bed.  You could order movies, or games.  You could call the nurse or change the channel of the TV.  You did a lot of your waiting there, just watching Disney.  But after your surgery you didn't like being stuck in that bed.  It wasn't long before you were ready for recovery.

1 comment:

  1. The color makes something just disappear! I love the bed all decked out!

    Your parents are so darling as is the "Uncle and Aunt"!

    Praying all goes well . . . keep us up to date!

    ReplyDelete