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.

Answers

You had one request for surgery.  You told me before we even went to the hospital.  I could see you glowing about it through my tear blurred vision on the way home from Dr. Peytons.  "Do I get to drive a car to my surgery?"  How you remembered that small detail from last year I do not know.  You have a great memory.  You keep my shopping lists in your head when I forget to write one down.  I should have known you would remember me telling you about the hospital in Connecticut.   When Brooklynn had her hernia surgery a year ago, the surgeons told me that big kids get to ride a Power Wheels back to the operating room.  You wanted to ride a power wheels into the OR for your surgery. 

You wouldn't say anything to the doctors or nurses at the hospital.  I was constantly reading in to your silence.  It was silence that pulled at my stomach.  The surgeons came to check on you the day before the surgery.  They told you what they were going to do, and asked if you had any questions.  You were very quiet.  I knew you had a request, but you wouldn't say it.  It was the only thing you were looking forward to. They were about to leave, and I waited for you to ask, but you didn't.  They were walking out the door, and I had to stop them.  They all came back in.  Those surgeons were like a heard of sheep, always following the leader.  The head surgeon stopped, and they all stopped behind her. I told them about the other children's hospital, and asked if they could arrange for you to travel in style.  They glanced at each other, clearly not used to a request like this.  But, I tell you the nurses don't take requests lightly there. Those cancer nurses fight for their kids.  They fought. They won. 

 They pulled a big wheel up to your door instead of a stretcher.  You got to wear you own clothes.  You were finally unhooked from your IV, and you could ride.  You stretched those legs that had been aching for normalcy.  Heads turned as you cruised through the hallways, parading your freedom from tubes and poles.  When we pulled up to the OR, they hardly knew who the patient was. They were expecting you on a stretcher.  I wanted to hug those nurses for keeping you off that stretcher. 

They dug up a gown to change into, and your prison break had come to an end.  The surgeons had you captured, and I had to let them take you back in. You got on the stretcher and I could see the weight of your nerves sinking on that bed with you.  You looked helpless. I liked seeing the free Kaylee fleeing in the halls, not the Kaylee filling with fear and anxiety.  You didn't cry.  Your silence set in again.  I wanted to walk with you and stay with you till you fell asleep, but it was only one door down, and they didn't let me.  I watched them push you down the hall, and around the corner.

 I cried.

We went to the waiting room expecting to hear something, but it was a lot of waiting.  I felt tethered to the chairs.  I knew we had a long time, but I couldn't go anywhere.  Daddy held Reese.  I held Reese.  Some little girls came over and held Reese.  She was a good distraction for all us sad, scared families in the surgery waiting room. She was giggly and light.  She blew raspberries through her pudgy cheeks. She made us all laugh a little.  I felt like our whole future, like your whole future hinged on what they would find when they opened you up.  No solid facts, until they could see it with their own eyes.  There was a worker at the front desk who received messages from the surgeons and we eyed her like vultures.  We ate up and dissected every piece of information she threw our way, no matter how small. 

One hour in. 

Two hours in. 

I welcomed the time.  Quick was bad.  That meant they couldn't do anything. That meant they close you back up.  That meant chemo, then surgery, then more chemo.  That meant it was worse than they thought. 

Three hours in.

The lady at the desk left.  The phone rang.  No one to answer it. It rang and stopped, rang and stopped.  For thirty minutes there was no one at that desk.  Finally one of us vultures got tired of waiting and picked up the phone. 

"Palmer!"  It was for us.  Your dad got it.  They removed the tumor.  It was huge, but it didn't rupture. They removed the kidney. Oh, how I never thought I would be so elated to hear that someone removed your kidney! It felt like the best news I had ever heard! More to do, lymph nodes needed to be removed they would let us know in another hour.  I could breath. Oh, how the air felt so much fresher.  We started sending the word out. I felt like those texts were doves spreading the word--tumor gone, tumor gone!  After three days of so much worry, so many tears, so much unknown, we finally had some answers.

A Little Secret

Kaylee, I'm gonna tell you something only I know, so lean in close.

There are only two times in my life I have ever seen your daddy cry: 

once, when he thought he could lose me,  

the other was when he thought he could lose you.

The Hard Stuff

Kaylee, I tell you the hard stuff, so you know the good stuff.  There is a lot of hard stuff when you have cancer.  Lots of crying, lots of wispering, lots of worry. It's not good to dwell on the hard stuff. When we focus on the hard stuff, it's hard to notice the good stuff. I've been learning that the harder the stuff, the more miracles you see.  If you didn't know the pain, the worry, all the scared feelings we had and you had, then you would never understand how the spirit lifted us up in times of worry, how he was our companion and friend.  There were times I couldn't stand on my own two legs but I was hoisted up. There were times fear choked my heart, but I found peace. I want you to know that hard stuff so you can realize that even with that horrible pit in my stomach of an unknown future, I felt so much peace coming to this children's hosptial.  I felt the calm reassurance that we were in the right place for you and that Heavenly Father had made sure we moved to Arkansas just in time for you to be treated here with such good doctors and resources. 

Kaylee, I know this life has hard stuff.  You are so young to have something so hard.  I hope you realize our great faith in Heavenly Fathers plan for you.  We know he is mindful of you and of us, and through prayers we have and will continue to see miracles.  I hope you learn that if you put your trust in the Lord you will never go wrong.  And that if you live worthy of the spirit that you will have a friend to help you through the rough times and to be your guide in this life. I want you to know that there has been nothing in my life harder than this.  But I have never seen or felt anything like the love, and prayers and fasting that people have offered for you.  I would have never felt the good stuff, without this bad stuff.  I want you to know the bad stuff, to remember what a life saver the good stuff was.  So we can remember how a nurse that was silly was such a beacon in the darkness, how a friend driving six hours to see you on your birthday felt like a warm fire during a blizzard, and how finding out your tumor that hadn't mastatisized and could be removed was as freeing as an anvil being pulled off my chest.  I hope as you get older and this pain and suffering becomes a distant memory of something that seemed really hard, that you will keep with you the strong memory of how the Lord helped us through it all.

Waiting

They shouldn't call it a hospital.  They should call it a waitportal.  It is a place they bring you when you have lots of questions, and you must wait to get any answers.  At least that's how it is with tumors.  I knew it was a tumor before I got there, because the woman on the phone who called from the hospital said so.  I hadn't heard it called that before.  I knew the pediatrician told her it was.  He just didn't tell me it was.  I took the long drive to the waitportal to think about it. Dad took the long drive hoping it was all a misunderstanding.  Reese took the long drive to coo and suck her thumb. You took the long drive to watch a movie and keep an eye out for the river Dr. Peyton said we would cross.  When we passed over it you were surprised.  You thought we would cross it on a boat. 

It was hard to go to the Oncology unit.  Murals were painted on the walls of happy kids.  Happy bald kids.  They were pretty paintings, but they made my stomach hurt a little for you.  We got to your room and they showed us all the cool stuff.  They hooked you up.  They said they take care of you there, and they didn't lie.  When you asked for something, people took hours to search for it.  They never let us down. 

We met with Doctors and Surgeons who never seemed to have enough answers.  It was a lot of waiting.  Waiting for a CT scan, waiting for a surgery time, waiting to find out what kind of tumor it was, waiting to see what kind of treatments you need, waiting to see how bad it was.  All that time gave us a lot of time to pray.  Pray that the Doctors would find the problem. Pray that it wouldn't be too bad. Pray that it would be treatable.  Pray that you could handle it.  Lots of people wanted to pray with us.  LOTS of people.  I think half the world is praying for you.  I know people on the other half of the world are praying for you. We felt the prayers.  They were tangible.  They helped us alot.  They brought to pass miracles and tender mercies on your behalf. Thomas S. Monson said, "Fear not, brothers and sisters, for your future is as bright as your faith!"  Even though not knowing makes us scared, we have lots of faith, so we know you have a sun shiny future.

Dr. Stein met with us after your CT scan. The scan confirmed it was as they suspected a tumor. It was big and it was pressing against other organs.  Even when we prepared ourselves for the worst, we hoped it would have been a big misunderstanding.  No preparation makes hearing  your daughter has a tumor easy. He said it needs to be removed, along with your kidney, but will only be able to be removed if it isn't involving any other organs. If it is they will close you back up and wait to do surgery after some treatments. Dr. Stein says you need chemo either way.  Your dad and I cried for your long road ahead.  We cried because we couldn't think of you in pain. We cried because you were fine on the outside.  I asked questions. You sat by and listened while playing Hannah Montana on the Xbox. You understood that you needed a kidney removed and you wouldn't be able to eat on your birthday.  You were very mature about it.  And seemed fine with waiting till we got home to have a real birthday party.   We didn't have enough answers. We had to wait until after the surgery.

The Doctors

Dr. Peyton called you Zelmo. He was pretty silly.  He bounced in the room and asked if you were Zelmo and if Jackson was your sister and Brooklynn your brother.  He called them Zelda and Zomo.  He asked where it hurt and wanted to look at your tummy.  He felt it a bit and said he wanted to check for a kidney infection.  After feeling it he said we should get a picture of your spleen.  He sent us across the street for blood, urine, and an ultrasound.  You, me, Jackson, Brooklynn and Reese packed into the dim little room and she squirted jelly on your belly and I watched her look and look.  I asked if she was looking at your spleen and she replied it was your kidney.  I saw her measure it then the other and the go back to the first one again. She sent us to get blood work with the promise of results at her office when we were done.  We got the blood work.  You took that needle like a champ.  They said you did better than most adults.  I know you took it better than I do.  You didn't flinch and watched what they were doing the whole time!  Jackson wondered how you could keep from crying.  You just shrugged.  They gave you a prize and we went back to get the ultrasound results. Back and forth, back and forth, with four tired hungry kids.  They decided to send us back to the pediatrician's office for the results.

 A change of plans.

Everyone was too accomadating at the pediatricians office.  No long wait in the waiting room.  No waiting at all.  It was the last time we would have no waiting to get some answers.  In fact, we were aloud to go through the doors ourselves.  Everyone was expecting us. Everyone knew us.  We've only been there a few times, and everyone knew us. They lead us right to the room.  Dr. Peyton came in.  He didn't call you Zelmo.  He didn't ask about Zelda or Zomo.  He talked slow.  So. Very. Slow.  He said your kidney is enlarged.  He said "they" would want to remove it.  He said, "this is serious."  I felt hot tears stream down my face.  I was mourning for your kidney.  I was scared. He said lots of people live with one kidney. I didn't want to scare you. So I stopped.  People live with one kidney-- I focused on that.   I sat down, and he told me more scary stuff, very slowly.  He said "they" would want to see her soon, and we could be there for a while.  "They" needed a CT scan to find out what it was, but she would need surgery.  "Could it be cancer?" I floated over the last word like it was an unspeakable thing.  He nodded. He told me "they" were great doctors at a hospital 4 hours from us.  He drew a map on a piece of paper.  Not for me, but for you.  You all watched him draw the map, so I could cry. He showed roads and a river we would cross before we got there. You were all so interested.  I needed that.  He said they hospital would call me in an hour, and to get things ready, call my husband and my kids situated somewhere for a few days.  I wiped the tears; could doesnt mean is. We stood up, and you and your siblings all cheered that we could go home and eat lunch.  He handed me the map, and lead me out a back door.  I turned back to see a few nurses gathering in the hall to watch me leave, and I hopped on the people mover that would make the next 24 hours a blur.

The Puzzle Pieces

A few weeks ago was when my I started noticing you had a lot of little ailments that didn't fit together.  Not one was reason someone would rush to the doctor, but they all came together so suddenly, like the end of Oceans Eleven.  I didn't complete the puzzle on my own, it took a lot of doctors to put it together. I just came with all the pieces and sort of dumped them in their lap and let them do the work. The first odd thing was your hands and feet.  Ever since moving to Arkansas, they were getting so itchy and swollen at random times.  We thought it was allergies because it came in spurts.  You wanted to go to the doctors.  I told you you had a well visit after your birthday.  You looked nervous and said you wanted to do it soon.  Your eyes were so worried. I felt like something was happening that I didn't understand for you to look so serious about it.  I took it seriously and record when it was happening for us to take to the doctors in a few weeks when we had enough information recorded.  I thought of your worried eyes after you left for school and decided to go where I always go for my important medical advice: Google Search.  I saw words like deficiency, vitamin B, and the one I grazed over-Hodgkin's Disease.  It wasn't really possible for it to be that, it's just an itch that lasts for a few minutes in the morning.  I dismissed it, and went back to the day--It would come back to my mind though. 

I told Cindy I would make a dress for Maddie for a wedding. It was a cute dress and I decided to practice by making you a dress to wear to church for your birthday that was on Sunday. I measured it carefully from another dress of yours.  It was looking just like the picture.  I couldn't wait for you to try it on. I went to fit it on you and I couldn't get that darn waistline to fit.  The shoulders were looking drapey and the stomach was tight.  I have made you a lot of dresses and that has never been a problem. I asked you to suck in, and it didn't really change much.  Lots of kids have potbellies.  I left it at that.  But it gnawed at me, and that night I told your dad it seemed odd, but lots of kids have potbellies.  I told Cindy the style may not work for kids.  Kids tummies are bigger than their chest and it looks a little funny.  But JCrew made it work, why couldn't I? She told me she would send Maddie's measurements and we would go from there. 

You got a fever Monday, it was low, and it went away and you were fine. Another friend had a kid with that a few days later--must have caught something from church.  A few days later, you were so tired you could hardly stand while we were on a short Target trip.  I thought you were being dramatic.  I don't now.  Then that night you threw up small amounts 3 times.  You stayed home sick that Sunday but  at home you felt fine. You did complain your side hurt after throwing up.  I told you it was sore muscles. That happens alot when you throw up. You mentioned it again Monday. Cindy called that same day with measurements for Maddie, her waist was 2 inches smaller than her chest. . . hmmm. 

Tuesday night you woke up with a burning fever and you said your side hurt.  I looked at your tummy while you were laying on the couch and it was bulging on the left side.  It was big and hard.  Your right side didn't seem as bad.  I was realizing that none of your siblings have gotten sick, and it has been at least a week since you had a fever. I gave you Motrin.

Time to check Google before rushing into the ER.  I thought appendicitis, but I'd be lying if that darn Hodgkin's possibility didn't enter my mind once in the evening.  But Hodgkins Isn't in the tummy. I left that thought alone to focus on the facts. Puzzle complete or not, I was gonna do something for piece of mind but when I came to check on you, you were asleep. Your fever was down,and that bulge had softened a bit, but it was still there. I took you to bed, turned off your alarm and told you you're missing school and going to the doctors first thing.  You liked that idea.

The Beginning

You know the feeling when you are on a people mover, and although your steps are small and slow, you are actually moving double time.  Things around you start to blur, and before you know it you are dropped of in an abrupt sort of way, and you have to find your footing again.  I stepped onto a people mover at about 9:20am on June 1st when I took you to the pediatrician because of a fever and a bloated tummy and was pushed off 6:30pm, at a children's hospital 3 1/2 hours away, abruptly --in the Oncology unit.  I think I'm still trying to get my footing.  And although what was going on around me was all a blur, I'm gonna try to put it down.  Because Kaylee, you are a champ.  You are one of the toughest girls I know.  You have been declaring "I'm tough" since you were 18 months old and have proven it time and time again.  But what you have been through, and the grace that a 7 year old can muster is amazing.  I've already learned so many lessons from you and this is just the beginning.