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Sometimes you need words to tell a story. . . .


                                                            . . . . And sometimes you don't.

Awareness

Coming into a new school in the middle of the year is the pits.  So, doing it two years in a row, is more than the pits, it just plain stinks.  You have not been the least bit interested in going to school, because you know you will have to start mid year after everyone already knows their way around.  You are very aware of how that is because you just did it last year when we moved. This year we are in yet another new school and since you are homebound right now, you will have another mid year entry.  Having your teacher coming to our house has been an amazing help.  She keeps us connected with the kids in your class.  She passes messages back and forth, she shows you pictures of everyone, and lets you know when they have special events. 

We read her our story, and she suggested we come read it to the class.  We told her we would bring a craft too.  You were starting to get excited about meeting the kids. When we arrived they greeted us with a big sign that said Welcome Kaylee!  We told them a little bit about cancer and why you have to stay at home.  Then we read them our little fairy tale. 

 I'm starting to understand why people talk about cancer (or any illness or disability) awareness all the time. I can't say before now that you or any of your siblings were very aware of differences kids could have.  And it is easy for a cancer patient to feel so different in a class full of healthy, energetic kids who have heads full of hair.  It's funny how talking about it makes people less afraid and more understanding.  No one from your class needs to whisper about your missing hair, because they can ask you about it.  You don't mind.  You like your differences now, and they do too.  Just taking that little bit of time to give some explianation and tell a funny story about cancer and treatments made everyone more connected.  Before we knew it you went from the mysterious girl who's desk has been empty the whole year, to just one of the kids.

After some talking, we started our craft.  We brought surgical masks for everyone to decorate. We told them that you wear one when your immune system is low to keep from getting sick, and told them they could keep theirs to play doctor, or give it to someone they may know with cancer. 

 As we were leaving, a little girl ran up and asked if you wanted her mask.  Soon other kids were giving theirs to you, until nearly everyone gave you their mask.  It was so sweet and such a fun thing to bring home to remember the friends you have awaiting you in your class. 

A Princess

Who would've thought creating a princess could be therapy? Who would've thought writing about her journey could help us sort through our own feelings?  Who would've thought imagining our story in the hands of another little girl just learning about her cancer, could give us something to think beyond ourselves?  Who would've thought reading it to your school class could bridge a gap between kids?  Who would've thought her adventure could make us laugh instead of cry?  Who would've thought that princess overcoming her stuggles could give us confidence? 

Then again, who would've thought that a princess could be bald?

Kaylee, I have cherished the time we've spent writing a story for other little girls who may lose their hair. I have savored every moment of seeing your talents shine.  I love hearing your heartbreaks, and your successes. Who knows maybe someday a little girl sitting in a hospital room in the oncology unit will be holding our story in her hands, and viewing it's glossy illustrations and feeling a little more confident about the things that lie ahead of her.

Rockstar Treatment

Look at all the medicine we were giving out to all you kids when you were all sick at once!

It's one thing to have cancer, but when you get sick when you have cancer people really step into action.  Anytime you get a fever of a mere 101 it's doctors orders to head straight to the ER.  We don't want any infections so we do it as a precaution.  Well, I knew when we heard that, that we've never gone six months without a sickness plauging the family at some level. So it was no surprise when you caught a virus from your siblings and the fever began to creep up.  There was something comforting in knowing you siblings had it first, and it was nothing serious, but still we went to the ER as we were directed. 

Even though I knew it was the same virus your siblings had, I was worried your blood counts would be too low to let you leave and sometimes it can take up to a week before your blood counts get back to normal.  I was not excited about the thought of staying in the hospital for a week.  When we got there, I was expecting to muscle around the staff to get us out of the waiting room and in to see a doctor, but it turns out, when a cute little baldie comes in wearing a mask, it's like Taylor Swift just walked in the building!  They treated us like royalty.  We walked right into a room (and i have been to the ER on a weekend before. . . that NEVER happens)! They took us through back hallways and got all your tests done  STAT.  They even brought you food (that never happens either).  I could really get used to this kind of medical treatment. 

They said you looked good, and your counts were high enough to go home.  They gave you some IV antibiotics just to be safe, and sent you home.  Of course, you don't get off that easy, the Oncologist gave you medicine the next time he saw you to make sure it didn't get worse.  And more medicine on top of what you already take, well. . . that did not get you very excited.  . .

Yummy!

One of these days we will go to the ER and we will just be regular folks, and we will sit there for three hours on a holiday weekend, and they won't even know that one time we came in on a day just like that and we were treated like a rockstar!

Switcheroo

You can't have two bald kids and not try to do a switcheroo.  When ever would you get a chance to do that again without an identical twin?  You and Jackson wanted to fool Dad, and see how long it would take him to notice who was who. Jackson was pretty reluctant to wear girl clothes, but you convinced him it would be so fun and deep down he knew it would be. You switched clothes in the car, and came into the house. Daddy did a double take for sure, but the giggles got the best of you two. 

You are two very silly kiddos :).

The Clinic Club

Every third wednesday now we go to Little Rock to get your big doses of chemo.  I have never found a more sobering place then the oncology clinic at the children's hospital. The clinic makes us realize all the things we are grateful for.  It is hard sometimes to realize the hard things people have to deal with in an oncology clinic.  It makes losing a little hair for a few months, and a little energy, and even a kidney, not so bad.  When we first started at the clinic, we were both nervous.  So many kids, all struggling with so much with their sweet bare heads and masks on their faces.  You kept close to me. You whispered and wondered about each of the kids and what they might have.  We felt so out of place there. 

It's funny how it didn't take long until we didn't need to whisper and wonder. Because we knew. It was like we joined a secret club.  Suddenly we knew why all those kids were so happy dispite their physical differences, or their lack or energy.  It really doesn't matter how much you are dealing with or what it is, everyone wants to be happy. These kids choose to be happy, everyday instead of looking for all the reasons to be miserable.  I can see now, why we are told in the scriptures to be like unto the little children.  Those kids, they have a lot to teach us.

Now that we are in the club, we see new patients come in.  We watch them try to get numbing cream on their ports, and get the pacaderm over it just right.  We watch them with their thick, flowing hair and wonder now if they are wondering about us.  We realize that there is some good that comes from cancer too, and we hope they aren't too scared.  We try to remember the things we thought, when we came in the first time. 

One day in the clinic, we saw Sydney.  She is a teenager.  She had beatiful hair halfway down her back.  You admired it.  We didn't know her name back when she and her friend and her mom helped her get ready for her first treatment. 

We found out her name three weeks later, when we noticed a girl in a wheelchair, with a baseball cap covering her bald head, and a fresh pink scar that ran up the back of her neck and dissapeared underneath her hat.  You told me you thought whoever it was, had brain cancer.  I nodded noticing the familiar mom I saw with a lively teenager only a few short weeks before.  When I made the connection, I reminded you of the girl whose hair you had envied and told you she was the same girl. 

You were surprised, and then I saw the empathy etched in your face. You knew all too well how that felt, to be so lively and normal one day, and be tossed through a physcial and emotional whirlwind.  You wanted to meet her, and bring her one of your lollipops.  Her dad was rubbing her feet, and told us her name.  He was the sweetest man, so concerned with you, and proud of the energy and liveliness you had. Here we were going to help them, and they were cheering us on.  Parents of kids with cancer are so sweet and  understanding, because they are in the club too. 

You were too shy to say much so I spoke for you. I told them you noticed Sydney a few weeks ago. I told them you remember recovering from surgery too, and it was hard, but time goes fast.  That's a good thing sometimes.  Their joy and encouragment strengthened me.  They were the kind of people you could spend the day with, their happiness was so infectious.  People like that make the clinic magical.  It is a place of common ground, for kids, and parents.  It brings people together from every background and culture.  It is a place of unity and understanding.  It's a place with amazing doctors who fight for you kids.  Their is a special place in heaven for pediatric Oncologists and staff.  We love how they cheer with our victories, and how they know just when to worry with us.  They are in the club too. 

Sometimes I think about the times when we weren't in the club.  How simple things were then.  How much I never knew.  I don't know if I could give back my membership now.  I'm such a different person, you are too.  You never knew how brave and how tough you could be. You amaze me everyday, and teach me and your dady and your siblings so much. We will all be forever changed for the better.  No, I dont think we could give that membership to the clinic club back.

First Day of School

We can learn so much from your easy going siblings. On the first day of Kindergarten in a brand new school, we sent off this excited little guy.  Instead of pulling up in the afternoon to greet him, he came home to find his sister in the hospital for a transfusion.  No one got to sit down and hear all about his day, or make him a special afterschool snack.  It was a chaotic and stressful afternoon that ended with a late night for Jackson hanging out at your bedside in the hospital.   I never heard one complaint that I saw him only for a moment to swap places at the hospital so I could run to the airport.  He didn't ever comment that we kept him out too late while he laid his head on his arm to eat his breakfast the next morning.  He didn't even mind that the first time I was able to ask him about school was at the end of his second day. I think he is more mature than me.
 

Kaylee, your first day of school was a little different.  You started a week after Jackson. You still got that special outfit on (so hard to choose which one). Only instead of walking through crowded halls with butterflies in your tummy, your teacher came to you. When you are doing treatments, your second grade teacher comes after teaching your class, and gives you all the work you need to keep up.  It turns out, you only need 4 hours of one-on-one time a week, to keep up with the 30 hours a week you miss being in school!