Baldies

bye, bye, bye!

Darn those drugs for taking your choices from you.  It is hard when you want to keep something that doesn't want to stay.  And that hair left one by one, until the moment came where there was no covering it up, or fooling anyone...even ourselves.  You and I sat in front of the mirror together.  You looked at what was left.  It had been a long time since you had really seen what was in the mirror, and it really hit you hard.  You couldn't believe all that had happened since the last time you really looked at your hair.  There was a lot of scalp showing and not much hair left, in the front anyways.  The back was still holding on strong.  But the back could've been bald for all you cared, you wanted something to frame your face, and play with in front of the mirror, and it was dissapearing even before our eyes. 

You wailed, and sobbed and bawled.  It is maybe the hardest i have ever seen you cry, and yet it was the most mature moment I have ever seen you have.  You stared at your reflection through the sobs and the crys and said "I know what I need to do, but it is just so hard."

Twenty minutes later we emerged from the bathroom, daddy called a few friends, and you were officially past tears.  We did our mourning for your lost hair, and you were ready to move forward.  I have not seen you shed one tear since for that hair.  You are a braver woman than I.  You wanted some support from a few friends, and at nine o'clock on a sunday night, we called over Hannah and her dad, and the Pena's and got ready for a little hair cutting party! Eli Pena wanted to shave his head with you, and it was offically an event!  I was ready to get this hair and the sadness it brought, gone.   It hit daddy harder than he thought it would. He watched teary eyed and humble from the sidelines as his sweet baby girl did the bravest thing.

Brookie was jumping up and down wanting to be next.  And Jackson, well that sweet brother of yours stood right by your side, ready for the two of you to be twinners.  He interjected with comments I didn't know could come from a 5 year old boy.  "Oh, mom, look you can see her eyes better!  They are so pretty!"  and "Kaylee, wow, you look really pretty bald"or "Mom, don't you think Kaylee is so pretty?"  Bless that kid.  You will never find a better friend than him. 

You were excited for feel that smooth scalp that had been hiding under your hair for years.  You looked beautiful and strong.  I will treasure this night in my heart always.

 Just remember you'll have to start letting me teach you some things too, because I seem to be learning some of lifes most poignant lessons from you.

Blood

Entering the hospital is usually not an exciting occasion.  So far, we were on a pretty good track of feeling worse at check out time than when we checked in.  It was not becoming your favorite place.  So when we got a phone call from the treatment nurse a few weeks after your "red devil" chemo treatment saying, "I have some bad news"  then well at that point it didn't matter what she was going to say next, I was in tears.  I'm not very good at going with the flow these days, and anything out of the realm of our new normal throws me a little out of wack, even though I try to hide it.  She said your ANC (infection fighting ability) was low, very low, and your red blood cells were too.  You needed a transfusion to get those red blood cells back up. 

I called Anne who told me all the reasons I shouldn't worry. She told me how you would get your energy back. She told me how your skin would get that lovely pink color again.  She let us know how great the hospital here is, and even that she would visit us when her nursing shift ended. 

Oh how we love Anne!

Since I was no longer worried, and we could do your transfusion locally, and we didn't need to stay overnight, we decided this could be a nice evening together. We packed some fun things for an evening of blood and togetherness.  The nurses were so nice, and the hospital was quiet.  Despite my fears of new people accessing your port and drawing your blood, they did great.  Ann came to your room after her shift at the hospital to hang out and get our requests for dinner. She told us not to worry about anything but the food, and went out in search of something that sounded good to us!  

She returned to give us Panera and Andy's frozen custard, just as I was poking at a cold, microwave pizza that sat before us.  We got your blood slowly but surely over a 4 hour period.

Here is a video we took before your transfusion so we could look back and say, man, that really helped!

Boy oh boy Anne was right! Your energy level went up.  You were chatty again, and feeling and looking great.  You couldn't stop staring at your palms and all the pretty pink color they had once again.

  It is the first time we have left a hospital feeling better than we came in.  So, yeah, I think a transfusion is a very good thing. 

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!