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 .