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 Five pounds lighter and Seven days after arriving we were finally able to go home!  The morning came where the doctors released you into our care.  I felt like first time parents again, bringing a fragile newborn home from the hospital.  I worried about being away from the doctors and nurses who had all the answers.  I longed for my own pillow, but felt myself clinging to the room looking for reasons that we may need to stay longer.  The nurses all advised us on how to care for this and that.  One nurse suggested we take the weekend to do something fun.  In less then a week, your chemo would begin and then we would be confined to germless places and uncrowded spots.  We loaded up the car ready for check out and our last weekend of pure freedom.  My mind was going a million miles a minute. Daddy's mind was too.  We were both planning a perfect weekend for you.  We just weren't planning it together.  I wanted to get some family pictures, find the germiest place I could think of to go, and have that missed birthday party.  Daddy wanted to get outdoors, go to the lake, and go out to eat.  We tried to mush our plans together and came up with the busiest weekend a post surgery, pre chemo girl has ever had!

We went on the boat, and spent the day on the lake.  You couldn't get in the water, so uncle Danny pulled you around in a watertight inner tube until he exhausted all his energy:

We got your friends together and had your birthday party at the salon.  You got your nails, hair and makeup done:

We got your pictures taken:

We went to the germiest place a post surgery girl could handle: Chuck E. Cheese!

We ate out, stayed up late, went to the movies, finally blew out some birthday candles and ate real cake, and completely wore everybody out!

All to soon, it was time to head back to Little Rock for your first Chemotherapy treatment. 

Diagnosis

The Oncologist entered your room.  I looked at you, finally unattached, tasting the sweet freedom from this waitportal on your tongue like an icy Popsicle, as you anticipated the summer ahead.  My heart was heavy for the anvils we were about to stack on your frail little shoulders.  He had test results and It was time to tell us both. He sat on the end of your bed trying to win your attention from the TV for a moment. He talked to you about dandelions.  He asked if you had ever blown the white fluffy seeds from a dandelion on a late summer day.  You nodded.
"Where do they go?" he asked you. 
You shrugged.
"Can you find them all?" 
You shook your head. 
He continued his analogy, telling you how we find out where the seeds land when a new dandelion grows in it's place. Your cancer is like that. They got the tumor out, but sometimes it's little seeds spread around and they can't see where they land.  If you don't get special medicine then a new tumor could grow in one of those places. He told you the medicine you will get is really strong. It will make you feel different.  It will make you feel sick to your tummy.  It can make your throat and mouth hurt.  It will make you tired. He told you it can make you look a little different.  It will make you lose your hair.  But he reminded you that you need it to kill all those little seeds and keep them from growing.  And when you stop taking it, then those bad side effects will go away and you will feel and look like yourself again. But you needed to take the medicines for a long time.

You were so quiet. 

He asked if you had any questions. 

You shook your head. 

He asked if you were okay. 

You nodded.

 No words. 

He told us both that they tested the tumor they had removed from you.   It was, in fact, a Wilms Tumor.  It was in stage III. The biggest factor in treatment was done.  Surgery was over, it was a success.  This was all good news. If you have to have cancer, Wilms is a good kind to have. It responds well to treatment. You needed a few weeks of radiation, and chemotherapy over a 6 month period.   I asked my questions.  He was done, your silence followed him out the door. 

You looked at me, your big blue eyes filling with tears.  "Do I have to lose my hair?"  It was my time to be the adult with all the solutions, but part of me wanted to curl up on your bed and cry with you. When did so much time pass that I was the wise one that someone looked to? Wasn't it yesterday I was curling up in my mom's lap crying over something?  I suddenly felt too young to handle all of this. I pushed it all aside.  I repeated in my head what my mom would tell me and what was becoming my mantra over the last week:

 I can do hard things.

So simple, and true. 

 It strengthened me.

 "You will look beautiful no matter what, and we can go shopping and buy cute hats and scarves, no one will ever even know." Your head was in your hands, inconsolable. You had been in this wing of the hospital long enough to know, that it's impossible to really hide a bald head.  I hoped my next offer was going to go over better.  "We can buy you a wig, with any kind of hair you want.  You could have curly hair, or brown hair, long or short."  Your head pulled up from your hands, and your big eyes widened even more.

"Really?" your tears practically stopped mid stream.  "I can get a wig. . . ?" I nodded.  Your mood did a one-eighty in lighting speed. A smile spread over your face as you exclaimed " I wanna lose my hair!"  The grip on my heart loosened at such an enthusiastic response. I learned a lesson from you then and there: always get excited for the little things that can make a heavy situation light. I'd like to say those were the last tears you shed over your hair . . .but what girl can say that?

Pictures

Here are some more pictures from the hospital:

Your Birthday cake that we had to have the day after your birthday, when they finally let you drink stuff.

Singing "Happy Birthday!"

Yum!

The cheering squad at the end of your bed.  It was a good reminder for you that we were all cheering you on to recovery!

Ready to get out of bed and try on new birthday clothes only 4 days after surgery!

Tickling the ivories!

The cheery poster aunt Katie gave you.  You wanted to give it to someone else, to cheer them up, before you left.  You gave it to a little 5 year old girl who was waiting for a new heart.

Your growing crowd of friends.  They almost edged you out of your own bed!

A Day to Celebrate

Your birthday is right on the cusp of when the warm air finally chases out those cold breezy spring days for good.  We always plan things outside:  Pool Parties, Garden Parties, Backyard Parties. Anything that has to do with summer.  The months preceeding your big day, your mind reeled with plans: you wanted to go out on a boat, water ski and tube, you wanted to get your hair, nails, and makeup done at the beauty salon, you wanted to have ice cream cake.

Never in the plans did I imagine desperately running into the house, while the car was running and ready to go to Little Rock for an unknown amount of days, to grab the shopping bags full of your birthday gifts.  I told myself I probably wouldn't need it. But it made me feel better to have them tucked in the back of the trunk. . .just in case.

The night before your birthday I was glad I had those presents.  Even though I'd finished your birthday shopping, it suddenly didn't seem like enough. Grandpa had arrived, and seeing that I had good hands to leave you in, Daddy, Reese and I left the hospital for the first time in 4 days, in search of something that could replace the boat, or taste as sweet as an ice cream cake. We grabbed this and that, hoping to procure enough stuff to make a celebration.  I wondered if we looked like zombies.  I felt a bit like a zombie. The cashier, on the other hand was rather lively. She looked at your daddy and I as she inspected our items and said in a bubbly voice, "looks like someone is having a party!"

 I felt a tug of war going on inside me. I wanted to feel sorry for us.  I wanted to tell the cashier how our daughter was in the hospital and we cancelled all her plans and now we had to make do.  But I wouldn't be telling her the full truth.  On the other side of that rope, I knew that even though couldn't bring you a warm day on the lake, we could transform a boring hospital room into a pink and purple palace! Just because you couldn't eat, didn't mean we couldn't make a three tiered cake of juice boxes! I knew we could give you the best stuck-in-bed-post-surgery-birthday-party a girl could have. I was happy with my resolve as we gathered our bags and went to the hospital.  Grandpa was helping you make a charm bracelet. It was the most you had used your hands since before your surgery. I cherished those glimpses of normalcy. I was glad I wasn't too busy feeling sorry for us to miss those tender mercies.

Grandpa, Daddy, and Reese reluctantly left for the hotel, and I anxiously awaited you drifting to sleep so I could work some birthday magic.   Once you were asleep I taped up streamers, and banners, and set out wrapped presents.   It looked like a birthday fairy had transformed your room.  I could hardly sleep, I was so ready for your birthday.

I was just ending when the harsh hallway lights washed over the room, as the nurses crept in to take vitals.  The small wedge of light spotlighted the banners and streamers and balloons. You offered a groggy smile and I whispered your first "Happy Birthday" before your weighted eyes gave into sleep again. It didn't feel like long before the herd of surgeons started your birthday early.  They didn't leave you empty handed. You'd been pleading for days to have something to wet that dry desert throat. They finally agreed to let you suck on some candy, or even a Popsicle. I scoured the hospital in search of a treat. Wouldn't it be the case, that lollipops are impossible to find on a Sunday morning in a hospital. 

I came across a vending machine with Lifesavers.  Were they ever. Though it took a while I was able to return with more than one life saver. Your first grade teacher was just pulling in, as I was on my hunt, and had arrived with wagons full of gifts. I knew you had been anticipating her arrival.  You declared when you awoke that morning, how you hadn't slept all night because you were so excited for Miss Walls to come. Miss Walls parked her wagons inside your room.  She sat in the rocker next to you bed. For the next hour she preceded to pull out, gift after gift from friends, students, teachers, parents we knew, and parent's we didn't, the principal, the school nurse (whom you never even had a reason to visit), other faculty and staff whom we'd never met, and even something from her own mom.  It was humbling for me.  It was exhausting  for you. Those tired arms didn't lessen your excitement in seeing what was in each and every bag and card. We began pulling gifts out and showing them to you.  I could sense your joy behind that mundane front those pain-killers gave you.  Your enthusiasm was coming off your skin in waves. We ended her visit with a video from all your classmates wishing you a good summer, and hoping you would get better soon.  It was a big morning for a girl with one kidney.

It wasn't long before you were making plans for the remainder of the day. Since Daddy set out early in the morning, with Grandpa and Reese to make the 6 hour drive to pick up your sibling to celebrate with us, you asked if he could pick up Hannah too. You were missing your friends.  He knew it wouldn't work out, but we told you we'd see, and hoped you would get distracted later.  You thought Jackson and Brookie would like the park at the hospital. You wanted to be the one to show it to them. It was a perfect idea! It wouldn't feel like your birthday if we weren't wrapped up in that warm summer air. The nurses pulled up your new ride.  We got you settled in that tiny wheel chair and ventured outside.  Our little adventure started before even leaving the oncology unit.  As we rounded the corner those sweet nurses had made a sign and were singing "Happy Birthday!"

They had a bag full of presents for you. The expedition out of the room was going great so far. You weren't ready to stop there.  We continued our quite awkward walk (I was single handedly trying to push the wheel chair and separate IV pole, while making sure all the cords and tubes didn't get pulled too tight or caught in the wheels) to meet up with your siblings outside at the hospital park. The door opened, and we were pulled from our cold processed environment.  Summertime greeted us like an old friend.  As we bobbled all those wheels over the threshold it pulled us into a familiar warm embrace. There was no boat waiting to whisk us off. But there was warm stone under our feet, and sunshine tickling our faces. There was a buoyant brother and sister anxious to play. It was starting to feel like a birthday vacation. 

 Jackson and Brookie made you cards and a book. They even brought you a bag gumballs that were hard to part with. We stayed outside for a long time.  That's a lot of work for a little healing girl.  So, once all the excitement turned overwhelming it was time to end our journey. 

Daddy knew one more surprise was coming for you, but he didn't say a word.  After getting to your room, and amazing your siblings with the piles of gifts you had acquired, some final visitors peaked through the door.  Hannah, and her family had made the long drive to spend a few minutes with you. What a surprise to end the day with!  They brought you a card that sings when you open it. Brooklynn tested it out over and over until it drove us mad. They found you an orange butterfly pillow pet to hold against your sore incision when you coughed. It was the best splint pillow in the hospital! How familiar it felt to have your friends on your bed, laughing, and playing with toys while we parents talked.  It was better than a day on the lake. Too soon, it was time they left to get back for school.  The family went to sleep at the hotel.  And I tucked you and your butterfly into bed, grateful for all these great friends we have.  We ended the day without cake, or family presents, but I think it was the most memorable birthday you'll have.

Grandpa Palmer to the Rescue

There is only one man I can think of who will sift through poopy diapers to look for swallowed nickles, create projects out of thin air, cook a meal to order for each person individually, take care of a nursing baby whose mama has suddenly left her side, convince a smooth talking 3 year old to go to bed, play football, soccer and basketball at any given moment without a fuss, be stuck in a house with 3 kids and no car for weeks on end, soak up every moment he gets with you though they are few and far between, send your mommy and daddy out on dates, clean up after every meal, spend hours creating a craft for you that gets smashed a minute later and keep a smile, and keep the dishes clean and laundry folded. 

He flew a thousand miles the day after your surgery

and rescued us. 

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.

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.