More Hard Stuff. . .

I'm really glad I wrote that last letter to you Kaylee.  Because when I'm sitting here now, writing you a new note, I'm finding it hard to write.  Not because I'm at a loss for words, or I don't know what to say.  But when you put the truth out there, sometimes it's hard to see it staring you back in the face.  The truth is, Kaylee, is that the cancer is back.  I hate to write it, I hate to think it, but it simply is.

Just when appointments felt like a fun day trip that didn't tie your stomach in knots or make you vomit in anticipation.  Just when we were starting to know what summer in Arkansas really felt like.  Just when we were planning back to school, and sports and making plans more than a week in advance, we get the news that there is a spot  in your lung. 

We sat there, you, Jackson and me, anxious to be out of this routine visit and on the the pool, and grandma and grandpa's, and dinner at a fun restraunt--When the doctor brought us back to his office.  If there is one thing I have learned in the last year, it is that a change of routine at the doctors, is never a good thing. 

He showed us a computer with a cute little picture of your insides produced by your latest CT scan.  There he showed us your lungs, and veins and heart.  Each stop at an organ left a pounding in my chest at when we would find the problem.  For a small moment I started to think, maybe there was no problem at all.  That maybe he just wanted to show us how good everything was going. But then he stopped, right there on your lung, and clear as day was a small little white spot, a lesion, as he called it. Everyone else just called it a tumor.  But boy how I clung to the word lesion.

He told us, we needed a closer look at that spot.  They would do that through surgery.  Then they would test it, and if it was, as he suspected, Wilms, then that means more chemo, more radiation.  I took it all in, you and Jackson happily by my side, not feeling that weight of the world caving in on us the way I seemed to be.  You looking at the bright side of each comment:
 "I don't mind surgery, that was kinda fun." 
"If I do radiation, I will get to see those nurses again, they are really nice".

 But even you have a hard time finding the upside to chemo.  It sucks.  We can all just admit that. 

I wanted to pace my mind so I wouldn't overthink.  It is something I have become quite good at (and something I've learned from you in these critical moments).  I needed to focus on surgery for now.  But leaving those doors, with so many unanswered questions, was too much. 

We took some time at the hospital park so I could pull myself together.  It was hard to pull together something so broken.  I felt like a shattered glass, that needed to be superglued back together in 10 mins and ready for use again.  It just wasn't going to happen. 

And yet, by some miracle, it did.  I managed.  I found the strength and calm, and I focused on surgery.  I focused on fun, and on you, and jackson and brooklynn and reese. 

We were given a gift of a week before surgery and treatments.  We dubbed it our week of fun, and I enjoyed your energy and your health.  I listened to you tell of your spot that needed to come out, and how easily you talked of losing your hair, when it just finally made it's reapperance. While it was hard for me and your dad not to think of the pains of last year, it was surprisingly hard not to think of the precious moments we had.  I read through these letters I'd written you. And I read the very last post and realized that through lots of hard times came so much good.  I looked back on the fun you and me times, that are only ours.  And I reminded myself that some of that rich goodness comes with all of the hard stuff.

When our week was up, we went to your surgery--you, me, and dad--and got our divinitive answer that the Wilms had returned. We now start tomorrow a long 72 weeks of going back and forth to Little Rock for inpatient chemo and more radiation. It's hard not to be dissapointed, but there are some things that I know.  I know that you are strong and energetic.  I know that you are a fighter that can last more rounds than any boxer.  I know that we've got a lot of faith.  I know we have prayers from around the world.  And I'm reminded that if our future is as bright as our faith, we will be seeing a lot of sunshine ahead.

What I Know Now

If you would have told me at this birthday:

That your next one would be like this:

Or during this summer:

that our next one would be like this:

I dont know that I could have believed that with moments like these:

 

That there would be so many moments like these:

All of the things I never really knew about love, faith, hope, and family on this day last year:

I know so much better this year:

And thanks to you Kaylee, we are all a little stronger.

Hair we are again!

Sweet and precious as the first time it came in, way back when you spoke more with your hands than your mouth, and your chubby feet padded across the floor of our tiny Virgina apartment, your hair has returned.  Not just your hair, but those dark full lashes and your arched eyebrows have all come back to a face that has it's sparkle back. 

 And we just can't get enough of this goodness.

Given The World

Atlas was a greek god, who was said to have held the world on his shoulders.  Did you feel like him sometimes during your treatments?  I know I did.  What a big burden to be placed on such small shoulders.  But how fitting for your Make a Wish visit, you were given a world to escape to, instead of be a burden.  It was the first time, we really felt free of any responsibilities for what seemed like such long time. 

We arrived at the airport and met our wishmakers as they helped us get our bags checked, gave us some spending money, and sent us on our way.  Walking into the balmy Orlando air was like a warm hug as we unloaded from the plane.  As we tucked away our jackets, and enjoyed the palm trees surrounding the Airport we could already tell this place was meant for us.  We got our rental car and headed to Give Kids the World Village, a place we will not soon forget.  Whoever thought of the place, must have been granted sainthood, because it is heavenly.  I am constantly humbled by things people are capable of. 

Kaylee hope as you look at these pictures when you are grown, that you won't just remember a fun vacation, but that you will remember that people we never knew made this happen for us.  That there were volunteers whom we'd never met, who laughed with us, who served us, who cried with us, who celebrated with us, who helped us, and who changed us.   And remember no matter how small you feel in this great big world, and how heavy the burdens you are called to bear, that it is by small and simple things that great, great things are brought to pass (Alma 37:6).

Superman

 

Uncle Kurt says, not just anyone can wear a Superman shirt.  Those things need to be earned.  That's what he told you as he handed you his christmas gift, with this heartfelt message

attached:

This shirt belongs

to the girl who deserves it the most;

The type of girl

of which any parent or sibling can boast.

A girl that showed

in the darkest of times

what it is like

when she really shines.

This shirt is a symbol

of STRENGTH, COURAGE, and HONOR,

things she learned

from her loving Mother and Father.

We are all blessed

to know this girl that can stand

to any trial, test, or obstacle

Just like SUPERMAN.

Uncle Kurt--he's one of a kind.  He swooped in here at Chirstmastime, let you shave his head, shared his baby back ribs, carried you around in the rain, babysat you and your siblings for a few days, and gave you a gift that will forever remind you of your strength. 

Wishes

Surprise!

You know Kaylee, there is a lot of bad stuff in this world.  But, man, I can hardly speak (or write for that matter), without a lump in my throat of so much pure goodness there is from the sweet generosity of others.  The things people think of to do for people in times of need never ceases to amaze me.  The Make a Wish foundation is just one organization that has turned the end of an exhausting journey into a memory filled, dream trip that we alone would have never been able to do. 
Revealing your wish, to go to Disney World, was the perfect way to celebrate the end of your treatments.  We gathered some family at your favorite restraunt and the Wish makers planned an evening of presents and surprises that alone was a dream come true.  Then we had the Trip just weeks to look forward to!  I am just so impressed at the lengths others go to, to help perfect strangers.  I hope we can always pass it forward.

Checking out the Itinerary

Wishmakers :)

"Wishes Really do Come True"--so true

One Happy Girl!

The Light

There is a light at the end of every tunnel.  Sometimes you are so far back that you can't even see it.  The farther you walk in what feels like a thick tangible darkness, you search hopingly towards a possible horizon, wanting to spot some sort of light.  Sometimes it feels like it may never come.  Other times it feels like the light is just a mirage, or what seemed like the light turned out to be just a small firefly, keeping your hope alive for a moment. Those aren't things to get you down when times are tough.  Those are things to be thankful for in darkness, because it keeps you putting one foot in front of the other.  It's what keeps us enduring to the end. We were thankful for every spark, every fleeting glimpse of light.  We basked in it.  But, with every tunnel, before you know it, you can see it -the real and actual light, at the end.  And with every step the light gets bigger and brighter.  And you know that it is for real.

For us, the week before Christmas, on December 14th of 2011 we were glad to step out of that dark tunnel once and for all.  Not only could we see the light but for the first time in 6 months we could shake off the dark unknown that had been at our backs for so long. I wish I could say that it will be the last tunnel you must endure. There will always be dark unknown places we must fordge through in life.  I just hope you always remember the strong grasp we had on that firm and unwavering rod of iron that lead us when we don't know which way is up, or what the next step was going to bring.  That tight hold made all the difference.  Because Kaylee, no matter the tunnel, the length, or how dark it may seem we will always be there to help you hold onto the truth and lead you in the direction you should go.