A Vacation for Two!

Soon after that first chemo treatment, began your 6 days of radiation.  Although your appointments took under 10 minutes, nothing with cancer is ever that easy.  They reminded us of that immediately, when we came for your first appointment and they told us that although the doctor was out of town for the rest of the week, he wanted to inform us that we would receive 5 additional days of radiation.  Surprise!  Its funny how you can have a calender full of unchangeable events and pressing appointments but in a matter of two seconds it can all be changed, missed or dropped altogether! Cancer takes first priority.  So, with a text or two we got an additional week of hotels set up, another week with grandpa at home, and another week of girl time, for just me and you.  Radiation is something I will never forget.  If you could forget, for a moment, that we were at the beginning of a fight with an awful life changing disease that we knew virtually nothing about only a week ago, then it was actually really fun.  It has been a long time since there was uninterupted one on one time with just me and you for days on end.

Last time that happened, I cuddled you in my arms for hours on end in a small little apartment in Virginia while we learned what it was like to be a mom and a daughter.  It didn't last for long, because that little Jackson didn't want to be left out of all the fun, and it wasn't 18 months later that he came to join our party.  You more then happily left my arms then, to play with your new best friend, and I have never longed for a day when it was only me and you.  All those siblings are just too much fun. Of course you grew up so fast with each younger sibling that entered the family making sure to take good care of each of them, like they were one of your precious dolls.  When you left home for a few hours each day to start school they would count the minutes until your return.  It was never disappointing, as you would come home with a backpack full of rewards you had earned, that you then divvied out to willing hands with excitement.  We all love our Kaylee time, and it was a rare treat to have you to myself. 

Our first morning in radiation, the nurses showed us the lay of the land.  We got a card to scan when we came in.  No waiting for us.  We went right back to a changing area and you picked out a locker to put your stuff in. Then, you changed into a large "kid-sized" gown covered in octopus and other sea creatures and we would wait for a few minutes until they called your name on the loud speaker.  You and I walked nervously to the treatment room.  It was plain, with a ruler thick door and a picture of flowers on the ceiling that looked like it was taken in the 80's.  They got a little stool for you to climb up on the table.  They asked you what your favorite singer was, and questions about your brother and sisters.

I watched as you lay calm and still on the table getting moved this way and that.  I knew it wouldn't hurt, I knew you weren't scared, but for some reason I found myself choking on my emotions.  It felt so silly, so I worked on swallowing down that lump in my throat as I wondered what happened to the girl who always seemed so grown up.  Just like that first day of kindergarten suddenly you seemed too little to be doing such big things.  I wished, like I once did as I watched you run off in an over-sized backpack onto a yellow bus, I could stop the earth from spinning for just a little while longer. The nurse paused her marking and adjusting to ask me a question I wasn't prepared to answer, and those darn tears came out.  Those, my-little-girl-is-all-grown-up-even-though-she's-so-small tears I've shed before. I couldn't explain that to the nurse, so I let her lead me out and nodded as she explained that you wouldn't feel anything. 

I sat nervously as I watched everyone filter out of that thick doorway, and that heavy metal door with the large yellow warning sign slowly clicked closed.  Just my little baby in there alone, her and Taylor Swift.  The red light that blinked out--danger, do not enter, radiation exposure--glowed ironically above the door.  I watched you on the small TV monitor as a big metal arm slowly orbited around your middle.  It wasn't 60 seconds and the nurses were lining up to unlatch that big door. I lined up behind them, and welcomed you off the table.  You got to put your first sticker on your chart, and then the rest of the day was ours! 

 We spent the first week going to the presidential library (that we were both disappointed to find is not an actual library), walking around the river market, shopping, eating out and eating in, getting ice cream at the Purple Cow, playing at the park, and getting lots and lots of rest. 

There was a building site across from our hotel.  You were wondering what it was going to be and I assured you, we probably would never know.  But isn't it amazing when your life stops, other peoples lives keep on going. After staying in a place for a few weeks just like magic, they went and built a restaraunt right before our very eyes.  When you're in a place long enough for someone to build a whole restaruant, it doesn't matter how much fun you have, you begin to miss home.  How you missed your brother and sisters, and oh, how they missed you.  They would call every night, and Jackson would ask you about radiation, and you would tell him your stories, while Brookie begged for the phone in the background.  Then, Brookie would come on the line and say, "Kaylay. . . you all betta?" And you would say, "no, not yet" and she would hand the phone off to Dad.  The nights got long and hard being away.  No amount of toddlers and tiaras, or trips to the ice cream parlor could make up for missing your family at home. 

We got a weekend to come home, but it just made leaving again that much harder.  The next week, we knew what to expect, and you weren't looking forward to it like you did before.  The goodbyes to Brookie and Jackson were heart wrenching to watch as you all cried and had to be pulled apart to get on the road. The chemo and radiation were changing your tastes and appetite now, and eating out wasn't that fun. And your hair was starting to fall out in small but constant amounts.  But, you had some more energy and we got past the bumpy week by Face-Timing grandma and grandpa in Greece, finding new short hairstyles for each other, staging our own glitz beauty pageant, and shopping for the much anticipated wig.  

Two weeks down, a break for independence day, and back for two days more.  We were both wearing thin, like a pair of old sneakers.  We left our second week in Little Rock full of memories and ready for a weekend to celebrate our freedom. 

Chemotastic

It wasn't long enough before our weekend of full freedom was over.  It was time to turn ourselves in and let them put on the shackles.  We left your siblings home with grandpa and daddy, you and I drove down to Little Rock once again to meet with the Radiology Oncologist and to have your first chemo treatment.  The nurses at the radiology clinic were so nice.  They made a fuss over you as the laid you on a thin little board and made molds of your legs and head, so they could keep you in perfect alignment for every treatment.  They got you all dolled up with butterfly tattoos and pink marker on your belly to map out the places they needed to radiate. 

They did a CAT scan and put on your favorite tunes.  You drifted to sleep in the dim room while Taylor Swift sang you lullabies.  The nurses all oohed and ahhed over what a sweetie pie you were.  When they finished all their prep for your upcoming radiation they came and woke you up.  They sent you away with free tickets to the zoo and you were pretty sure it was the best doctors appointment a girl could have. 

We went to the hospital and met with your oncologist.  He had great news on the lab results from your tumor.  It was stage three with a favorable histology.  I felt as light as a bunch of balloons. That was the best news we could hear about your cancer.  It made the treatments simple and the prognosis great.  They didn't have enough time for your chemo so they made arrangements for us to stay overnight and we had the evening to ourselves.  We went to the zoo in the sweltering 100 degree weather and had the place to ourselves.  we floated from exhibit to exhibit finally free from the worries that things could still be worse than we thought. All our questions had finally been answered.  All the lab tests were finally done, and we could move forward with our protocol.  We went out to eat and ordered some big yummy desserts to celebrate. Then we returned to the hotel and all reluctantly went to bed a little nervous for the next day. 

The next morning we made our way to a new area of the hospital.  This area was slightly more cheerful than the Oncology unit.  It was the clinic.  There were no murals of bald kids.  It didn't need any.  Sweet little baldies filled the chairs, waiting for their names to be called to get their weekly chemo cocktails.  They called you in and we didn't know what to expect.  We were put in the infusion room.  It had beds around for others. I wanted to know what each kid and teen had, and their treatment protocol, and how the parents coped with it all.  I felt connected to those sweet parents whose eyes were tight with worry as they watched their children fight this horrible disease. 

Plenty of kids came and went while we took extra long getting you all preped with IV hydration to make your first round of drugs as smooth as possible. They got you set up with a TV and food and you rested.  I braced myself for the emotion I knew would flood in while we all covered up with surgical masks as they accessed your port for the first time, or while they donned hazmat suits to push harsh chemicals into your tiny body.  But it never came.  I couldn't be sad.  It was time to start this.  I was more ready than you were.  But you took it like a champ. . . as always. 

 We stayed after your chemo for 3 hours to get more IV hydration and then we could make the long trip back.  They sent us away with plenty of medicine to help with side effects, a list of things to expect, and a LOT of barf bags.  We left the hospital 6 hours after arriving.  Only five minutes of that time was the admisnitration of your chemo.  The rest was precautionary medicines and hydration to keep you feeling the best they could.  I imagined they would drip in saline sized bags of chemo over many hours.  I couldn't believe that only a few mLs of medicine in a small syringe could pack such a punch.

On the way home, you started to feel the side effects.  Your arms and feet were getting sharp pains.  You flinched with every blink because of the pain shooting through your eyelids.  You looked nervous about all the new sensations, and I couldn't watch. It wasn't my turn to cry, but tears welled up without my permission and by the time you were writhing with nauseousness I couldn't turn around.  I want to be the strong one, but you are much stronger than I am.  By the time we pulled in the driveway you were drained.  You groggily slithered out grasping your barf bags. Jackson came running out to see you and you perked up when he was so impressed with all your vomit. The two of you ran into the house together. You laid low for about 20 minutes and then, like magic, you got up and the energy was flowing again.  You were riding your bike, playing basketball with daddy, and running around with your siblings.  Once again you reminded me that this doesn't have to always be so hard.  I settled into the normalcy of the evening, counting my many blessings as they played happily in front of me. 

Angels

Kaylee, do you believe in angels?  I don't mean winged cherub's with mystical halos.  I think we have had a lot of angels looking out for us.  I think that your great grandparents, your uncle, and others who have passed on before you even came into this world, have been keeping a close eye on you. Maybe some siblings or cousins, who haven't come to our family yet, have been cheering you on from beyond the veil that separates this life from theirs.  But angels aren't just from heaven.  They are hear on earth too. I feel like I have met so many angels in the past few weeks. Although they had no glowing aura, I feel like they helped save us.  Those nurses and doctors whom we trust so much with our lives, who could rush and punch in and out of their job and be done, but instead settle for nothing less than perfection; those people are angels. The friends who quietly snuck into our house while we were far away at the hospital and threw out those rotten bananas that I worried about when I was trying to stop worrying about you. Who put away the laundry that was left in heaps ready for me to fold when your doctors appointment was over.  Who removed our stinky trash and wiped the dust off our floors and splatters out of the microwave, in a hot house that was left behind without a thought; oh Kaylee, they were angels! So many other angels have helped us in ways I would never have thought!  They sent you cards, and crafts and packages to cheer you up and give you things to do on the many days we are stuck inside. They sent me notes of encouragement that lifted me up on hard days. They brought us warm dinners at dinnertime and frozen ones to save for later. There were angels with cancer who simply came up to us in the waiting room to see how our treatments were going and tell us their success stories.  There were some angels who made sure we had what we needed while we were gone for days on end, and some who saw that our family had what they needed when we left them behind.  Yes Kaylee, I believe in angels.  I can't say there is a person in our family who doesn't.  It was angels here on earth and up in heaven that helped us carry our heavy load.  All these people have taken their time to join in our fight so we wouldn't have to do it alone, they are our angels . 

Check Out

 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.