Hair

 It is the first thing we see when babies are born. How quickly it becomes a defining feature.  The color, the thickness and texture.  If it is slow in coming, we distract from that by gluing big bows in it's place.  We make an event of the first haircut, and even save it for posterity to see.  We fuss over it every morning, and torture it with products and devices.  Yet we can't get enough of it.  We love it some days and hate it others. I think we all wish we could just shave it off and be done with it all together sometimes!  You know that is easier said than done.  Because you have sat holding that most precious possession in your hands, as it lay limp and lifeless, Wishing for when bad hair days didn't include stratigically covering bald spots with clips.

It began coming out in almost unnoticeable amounts. We were in the car, after your 3rd week of treatment, and you noticed small bunch of hair tangled in your fingers after running your hands through.  There was so much anticipation of this moment, and you were excited!  You ran your fingers through over and over, each time capturing 5 or 6 strands in  your fingers and let it fly through the car as the wind rushed through the windows. It swirled around  like confetti and stuck to everything.  It was a fun day to see you so ready for the changes ahead.

You were ready for that promised wig.  We went to a local wig shop not knowing what to expect, and while child cancer patients were not their normal clientele, the lady dug through the back, and found a few things we could try.  Oh, boy, are kids wigs UGLY!  We had a good laugh as you tried out some Dorothy Hamel wigs, and a monk like halo.  But then she found another that I'm pretty sure was meant for you!  It was your same basic color, it was long,and straight.  It was just what you were hoping for.  It fit perfectly, and we walked out of the store with some piece of mind in a little green bag. 

 Your hair falling out wasn't what either of us expected though.  I think we both figured it would come out in huge chunks, or that one morning it would all be swirled around your pillow and that would be that.  Neither of us were prepared for the long agonizing process it had become.  The fun of it falling out was lost after a week about a week, and it gave way to reality. It came out regularly in such small amounts, in the most irregular pattern imaginable. 

After a few weeks, we noticed it lay differently and thought cutting it shorter in the back my help it fluff back up a little.  You did not want it short, but you didn't want it to have bald patches, so you reluctantly agreed that to cut it shorter in the back, if I were the one to do it.  Yikes.  I was not expecting that, but I got out the scissors and put my cutting skills to the test.  It seemed like I was in a fog, hacking here and there at your beautiful golden locks while you sat in front of me so trusting and dependent. I finished, and despite my lack of skills you looked beautiful.  I determined there wasn't much I could do to that hair that would make you look bad.  Your beauty shines through anything.   The back looked nice and full again, but as days wore on the front was getting so thin, that getting ready to go places usually led to tears.  You hated that it didn't look right, and decided avoiding mirrors was better than worring over it.

 We let it go for a while, but I was at a loss.  What should a good mother do?  You would run to the mirror to put a fun clip in, and realize you didn't have that full hair atop your head anymore.  It was hard on you.  It was hard on me.  Should I watch you in agony, fixing what inevitably will be lost, or do I try to give you some control back and help you to shave it off?  I knew what was hardest for me.  Watching strand by strand, your hair slowly disappearing. Sweeping the wood floors, and bushing your golden tangles into the dustpan, destined for the trash. I couldn't figure out what was going on in your head. Why wouldn't that stubborn hair just come out already!?  Daddy and I expected there to be a more definitive moment for the shaving head decision, but there wasn't.  We would mention it here and there as an option, but that made you sad.  It made us sad too.  We didn't want to see you sad.  We let gave up on that and let you make the decisions. Finally we got that red devil chemo, and it made our decision for us, whether we were ready or not.

Sisters

What account would be complete without recording the sweet acts of those little sisters of yours.  They may be too little to fully understand what is going on, but that doesn't mean they can't put up a good fight in this battle of ours.  Your Brookie Bean just adores you. She wants to dress like you, play games with you, she even wanted to shave her hair off (and still does) just like you. She has her own special language with you and loves to share surgery stories with you. She insists on talking to you on the phone after every treatment to see if you are all better and checks your scar everytime you walk in the door from the hospital, like it's fading is the mark of your improvement.  Brooklynn can cheer you up with a dance off, by belting out lady gaga or rappin MC hammer, or by serving you a spot of tea in her kitchen.  She is so concerned when you have to go to Little Rock, and worries that you won't be home before she goes to bed. That girl is one special sister. 

We can't forget about little Reese.  You may wonder, what could a baby do to help?  Our Reese was born just two weeks before the hardest year of our lives.  Her easy-going personality, and sweet spirit has kept us grounded throughout all our trials.  Reese has an amazing way of helping us all get out of ourselves for a moment, whether it's to watch her do a new trick, or reciving one of her sweet open mouth kisses. She is the weight that holds this big bunch of ballons on the ground. She helps us keep everything in perspective. She sat through that blur of doctors appointments at the beginning of June, and through a long stressful surgery, blowing raspberries, sucking on toes, and charming everyone she meets.  She has happily been carted along wherever we need her to go. I think she knew just what she was doing when she joined our family over a year ago.  I don't think she wanted to miss this opportunity to help.  How lost we would be without her!

Kaylee, don't ever forget what wonderful siblings you have.  They love and adore you.  No amount of time, or hair-pulling, or clothes-stealing, or car woes, or anything else you guys will face together in the years ahead will ever change that.

Jackson

Your brother needs his own chapter.

It is hard to express in words or pictures what a sweet soul that boy has.  We knew of his special spirit long before your diagnosis. But it takes something like this sometimes, to remind you just how perceptive and intuitive he is for a five year old boy. Kaylee, do you know you are always his best friend, even if you say he isn't yours? He knows just what to say to you when you need it most. He would stay up late wondering how you could go from feeling fine, to having such a big disease, literally overnight. Our Jackson has been ready to fight with you, maybe since before we even knew there was something to fight. He is your biggest fan.  He was so eager to be a part of what you were going through. Even though you'd never tell him, I know you missed him like crazy when we spent those long weeks in Little Rock. 

When you your hair started coming loose in small steady amounts, he wanted to lose his too.  He was sure it would be the coolest thing, and to show you, he had dad take him out back and shave off all his hair. Just like that.  Not a second thought. But cutting it with gaurdless clippers wasn't enough.  That wasn't bald like you were going to be, so he insisted we take a razor to his head, so he could feel only his skin.  He wondered if people would think he had cancer!  You were both so eager for the trip to Little Rock when you knew this time, you could do it together. 

We made the long drive, and you slowly learned how to share again.  He was patient with you as you moaned and grumbled about sharing toys, elevator buttons, and snack choices.  I reminded you how lonely you had been without him, how your stomach hurt after talking to him on the phone and how you sobbed into my shoulder wishing he were with us in our lonely hotel room. It didn't take long for you to remember, and suddenly sharing didn't seem so bad. 

We drove straight to your last radiation appointment. You showed Jackson how you could  hang out the car window to punch the number code to make the parking gate go up.  Then you took him to the locker area and showed him how to turn the key to lock up your stuff.  You showed him off to all the nurses, and they loved meeting your not-so-little, little brother (afterall he is nearly as big as you!).  You showed him your sticker chart, and since it was the last day you got to keep it.  They dug up some awesome Tshirts for the both of you.  They had boxing gloves, and read "You think you're tough?  I'm fighting cancer!" Jackson, a true fighter, couldn't wait to put his on.  I don't think he took it off the rest of the trip.

After we finished up your final radiation treatment, you hugged the nurses and we went to pick out some snacks for the hotel before check in.  We made our way to the hotel, and the two of you were so busy with plans that it was hard to keep up with what we were going to do next.  We finally decided on pizza, and found a New York style pizza place to get a little taste of home. The trip was all about you two, so you both chose a seat out on the patio and we talked about how fun it would be to have the rest of the family there with us. 

We headed back to the hotel with full bellies and got ready for a nice swim to cool off from the scorching southern heat.  We played marco polo, swam races, and floated around until the sun started to go down.  We headed to the room and watched a movie on TV.  We dug into our treats and couldn't resist a game of chubby bunny. 

Watching the two of you laugh, and whisper, and play lifted some more of those weights that seemed to constantly sit on my shoulders. We all squished into one bed snuggled up close and fell soundly asleep.  

 The next morning was Chemo.  We headed to the clinic after breakfast and got settled in the Infusion room to recieve your first dose of what is nicknamed "the red devil" because it is bright red, and it it attacks your bone marrow to the point of dangerously low immune systems, and anemia along with other unpleasent side effects. I'd been dreading it since I heard the nickname from parents whose kids had been admited after their doeses of the red devil. No mom wants to hear a nickname like that for a medicine about to enter her daughters blood stream.  But Jackson helped make everything lighter.  He thought everything you did was so cool and so tough.  He would say things like "wow, kaylee really is tough," or "I can't believe she doesn't cry when she gets a shot. . . Kaylee, how do you not cry!?" He was wishing that his pee would turn red, like yours would.  He sat patiently through the 5 hour doctor visit, just to be with you, and cheer you on.

It's hard to be the sibling of someone with cancer. Jackson watches as you get packages and cards in the mail, have get-aways with mom, eat ice cream without even having to have dinner, miss out on chore duty, and he could put up a fuss, but he rarely does.  He worries for you. He encourages you. He tries to make you laugh when you are sad, or sick. He tries to learn all he can about cancer, and cells, and chemo to know just what you are going through. He puts in so much into this battle.  If he could he would take his light saber and take your cancer head-on.  He is such a small boy to make such a big contribution to the fight. I often wonder how we would ever do all this without Jackson. He will probably never get the credit he deserves and he isn't even looking for it.

Jackson, all this said, there are no real words to describe your sweet offerings.  You may marvel over super heros, but I marvel over you, and what a real hero you are.

Independence Day




(Kaylee and her friend Hannah on the far left)

  Independence Day brought on some new meaning this year as we got some freedom from our rigorous schedule. The setting was picturesque.  It doesn't get much more Americana than this, Kaylee.  Running through a field, over-looking the lake, chasing candy dropped by a veteran pilot from his prop-plane while live folk music played in the background.  It is a memory I will keep for a long, long time.  It was our first touch of normalcy since your treatments started.  It didn't matter that you were too timid to play with anyone. The last month had changed your world around.  I wondered if you felt a bit like a retainer that had been left on the dresser for a month, that suddenly became useful again, but didn't quite fit in the same spot it once did without some adjustment; because that is how I felt. To add to the akwardness adjusting our way back into society, we had been informed of so much we shouldn't do by the doctors and nurese in attempts to keep you free from germs.  No crowds, no stores, no church, no school. . .and here we were breaking the rules.  You are not a rule breaker (I love that about you). You loosened up enough to play with Hannah, but you kept us in your sights the whole evening.  We didn't leave you without a few precious rules.  Even though we were breaking rules, we were sure to put some in place. . . no food, no lake, and sanitize, sanitize, sanitize those hands any chance you got.

You were tired from all the radiation, and when the fun of walking through the woods, and chasing candy had faded, we all laid out on a big quilt, all snuggled up together as the sun disappeared behind the lake. You curled up in daddy's lap under the biggest sky I think I've ever seen.  I watched those fireworks burst and sparkle over the lake that night, cuddled close to my most prized possessions, so thankful to be in this country. What a blessing to have such good health care, and doctors at our disposal.  My heart was heavy in gratitude for all those who fight every day to make possible our rights and freedoms and I couldn't help but feel hope and excitement about our future.

I was totally unaware that you spent that glittery display soaking daddy's shoulder with your tears, knowing you had to leave your family again to go to Little Rock in the morning.  Each parting was harder and harder, and I couldn't bear those tears anymore, so when we packed up for Little Rock the next day, we brought along a little something extra. . . Jackson!

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 .