Prayer

Let me tell you a little something about prayer.  It works.  It's simple.  All you need is faith.  I know the Lord hears, and answers our prayers. 

Last month, I asked for a miracle.  You were getting a fever, the second one between this last chemo, which meant this time, it could be something serious, an infection, or maybe you picked up a virus from the doctors office, or hospital.  Eitherway, there were two things I knew at 10 o'clock on saturday night: You had low counts, and wouldn't be able to fight off what ever it was alone, and I was gonna have to take you to Little Rock if it continued to rise.  A three hour drive in the middle of the night, with a seriously ill child is not something I felt like I could do, physically, or emotionally.  Daddy couldn't handle that either.  While I went to get new batteries for our thermometer he came in quitely to tuck you in, and while you were fast asleep he felt your warm forehead, and gave you a blessing.  I got home and took your temp--100.  Fevers, in my experience don't go down on their own.  I texted my mom and Gunnisons mom.  They both told me they would pray for a miracle.  I waited 30 mins, then grabbed the thermometer, wondering if it was time to get my stuff together once again, for the third hospital visit in 2 weeks. 

Before going into your room I stopped and got on my knees and asked my Heavenly Father to grant us a miracle, that your fever would go down, that you wouldn't have an infection or virus, and that we could stay home until wednesday when we'd have to go for your next chemo. I got up and took your temperature--99.2.  It never went back up that weekend.  

This was not the first time, nor the last. But it is a clear and immediate example to me that we are not left abandonded here to fight this fight alone.  Your Heavenly Father is watching out for you.  And although he didn't see fit to take it all away, He is watching over your healing, one small miracle at a time. 

Soul Mates

There are people I have met in my life that I feel a deep connection with.  We may not have done everything together, but there was something that connected us to our souls, that I cannot explain except that It felt like we were destined to meet, to be there for one another.  One thing I know, Kaylee, that you won't forget when all of this is over is the friends you have been privileged to meet.

 Each one carries their own special stamp that leaves an impression on our hearts. We have met some pretty amazing people this time around.  People whose everyday life revolves around ANC, and CBC's, and WBC, and NED and all sorts of other complicated abbreviations just like us.  I am able to connect with the mom's about trying to carry on serious conversations with the morning round up doctors sporting bed head and morning breath, and you can chat with the kids about the strange taste that appears in your mouth when the nurse flushes saline through the port in your chest.

At our last treatment we got to spend lots of time with Maddie.  She had a wilms relapse the same time as us and our treatments finally lined up.  The nurses all joked about you two being the social bugs of the Hem/Onc wing, cause they could never find you in your rooms.  You two were so busy painting nails, doing crafts, going from one playroom to the next, and one hospital room to the next gliding this way and that on your IV poles.  She gave you the opportunity to be a normal kid, even at the hospital, just playing with your buddy.  She made the time pass by so fast, we couldn't believe it was time to go home after our 3 days were up. 

 

Then at our local hospital stay for your neutropenic fever (that's a fever with no immune system to fight off anything) we met Gunnison, who was in for the very same thing!  He was diagnosed the exact same day as your relapse with Neuroblastoma, a nerve cancer.  It didn't take playing but a few rounds of Would You Rather before you guys were attached.  It felt like were were at a college dorm with all the junk food and late nights and back and forth between rooms.  When it was finally time to go home you both actually looked disappointed, until you found out you could still play together since they live in our same town.  What a blessing to have such a good friend right near our home that you can spend those long isolated low count days and weeks with. 

And we cannot forget Brooke, who has Wilms also.  We met her at our first treatment.  She and you danced to "Call Me Maybe", and even got the nurses dancing along.  You had a popcorn movie party, and painted nails (a must for a hospital stay!).  Even though they live far from us, we are constantly keeping on top of her progress and she yours.

Each of your new friends, is a little blessing.... wait, not a little blessing, a huge blessing.  Seeing a gloomy hospital stay turn into a party, is a big thing when you have 20+ hospital stays in the upcoming year. 

 These, Kaylee, are wonderful kids. You all have dealt with more than a kid your age should have too, but you all do it with so much heart that you set an example for everyone around you.  There is an instant bond when you glide down the halls on your IV poles, or play games and discuss what it's like being bald, or squish onto the same hospital bed to watch a movie with someone. It's hard not to fall in love with these little warriors who mean so much to us, whether they are long distance or nearby they are your forever friends, your cancer buddies, and your soul mates.

Magic

The first day of chemo this round, we took a walk to the playroom and got there just in time for Bingo.  They had a TV camera all set up to broadcast it to all the kids in the hospital and behind the caller was an exciting spread of prizes for the winner.  When you called out, "Bingo!" you had your eyes on one prize in particular.  It was a Magic set.  We carried it to your room and started practicing tricks.  Once you got one right for me, you would try it out on a nurse or a tech.  Soon word got around about your magic tricks.  Nurses and hospital workers would make a special stop in your room to watch you make snacks appear in an empty box, or your wand turn magnetic right before their eyes.

Right now, we just finished your second round of chemo.  It's a month that by all accounts should be rough.  Surgery, Radiation and 2 rounds of 5 day chemo treatments should wear a person out.  But here it is 9 o'clock at night on your 5th day of chemo, and we are waiting for your the final drips of chemo to finish up, and you are dancing, singing, doing magic tricks for the nurses, and I am realizing that the real trick here is how you still have so much energy. 

It is no surprise to me that one of the Social Workers asked you to be the child Ambassador for the American Childhood Cancer Organization in Arkansas.  You get to be the poster child for cancer in Arkansas.  And really, if you are going to have cancer, why not do something positive with it?  It fits your personality perfectly.  You were able to have a photo shoot, and paint a picture to be auctioned of at a fancy gala.  Your grace and energy and spirit are constantly inspiring, not just to me, but to others we meet.  It is so fun to watch you shine, in even the toughest situation. 

 Your sparkling personality has a way of drawing people in.  Even at a routine stop at the gas station on our long ride home your few moments there brought a sweet crowd of workers.  As you sat on a chair giving your queasy stomach a rest before our final hour of driving, a nice lady asked how you were feeling and offered you a soda. Then she told you how strong and brave you are, and with her carrying voice told you you were gonna beat this cause you were a fighter. Her energy was like magic. It gave us a new wind, and when we got up to go, she cheered us on our way out the door cheering, "You can do it! You're almost home!" And just like that she conjured up the energy we needed to finish our long drive. 

You give a little magic and get a little magic.  That is something we have learned on this journey.
It's magic in the way people seem to know what we are missing or needing, and just like that we may get a phone call, a package or card in the mail, or a gift on the doorstep and like magic, something that we needed, or wished for, or never even thought of, but so dearly appreciated, was done for us. 

Now, of course, I know it's not real magic.  Like the tricks you practice to amaze your audience, we have angels around us, who are busy working their magic to make our lives a little easier during these hard times inspiring others or lifting us up, so that we know the Lord is looking out for us.  I've never been more certain of  His role in our lives.  He has surrounded us with angels here on earth and in heaven who cheer us on, and send that magic we need to finish this cancer once and for all.

Choices

There is something I have thought a lot about as I've dragged myself, with lead feet, down this worn path I thought we'd escaped. When we got our first real answer that the spot in your lung was cancer--and your treatment would include a year or more of chemotherapy requiring a hospital stay of 3-5 days every three weeks--and my gut was wrenched from my core, I recognized it's existence even if I didn't want to acknowledge it.  But when we made that first trip to be admitted for a week for your first cycle of your new regimen and I saw the battle-worn parents around me, I knew that our survival in all of this was going to be about choices. 

We can sit and sulk over our lot.  I can't say I haven"t.  I try to follow your example of child-like acceptance and trust, but I know too much and have lived too long to be perfect at that sort of thing.  But it dawned on me, as I watched you and your IV pole glide down hall like best friends, waving to nurses and making friends with other patients.  And as you set up a manicure stand and gave the nurses and patients free manicures. And as you taught nurses hand jives, and challenged them to glove-putting-on races. And when I saw you playing with every bit of energy you have. That while we may have had no choice in this recurrence of cancer, we certainly have the choice of what we do with it. 

I imagined us hulled up in a harshly lit, hospital room for the foreseeable future, you curled up in agony, and me helpless at your side, forgetting what happiness even felt like.  But I was so, so wrong.  It helped that we were some of the first to try out the brand new hospital wing, in which Oncology now sat.  It feels like the Hilton of hospitals, with it's wood floors, recessed lighting, and large bathrooms. We could relax and spread out and enjoy a little home away from home.  And while even a nice place could feel dark and lonely if we let it, I just never factored into my future your attitude. You never waste a moment that could be enjoyed.  And Kaylee, not everyone does that. 

Not everyone knows that we can choose how we react in different situations.  I don't think I even knew that.  It feels like we have been given too much to bear sometimes.  And then in a moment of seeing you and your cute little chemo friends dancing to "Call me Maybe" with your IV poles I can see that there is joy if we choose to see it. Not just joy, as in, oh that's cute--but seeing-the-light-for-the-first-time sort of joy. 

It feels like we had this stale existence, where we thought we knew happiness and fun, but we went about our day the same way all of the time.  I imagine it to be a lot like Adam and Eve in the garden of Eden, thinking, this is a really great place to live.  But I guarantee, they never knew how great it was or what it meant until they were out in the real world with the harsh elements building up around them.  And then when the sun finally peaked through the clouds, and the little plants they raised from seeds they dug into the cold ground with their own hands, finally sprouted from the earth, then and only then, I think they knew what real joy was. 

With such excruciating pain, comes some of the most exquisite happiness.  But we have to choose to see that.  I've chosen both. Sometimes I can't do anything but dwell on the pain, but you Kaylee, always choose the better part.  It's a perfect example to me.  And so, I've decided to make my choice. It may be something I have to choose every morning. But you have made it easy with your clear example of what is better. So, I'm gonna dance when it's dark.  I'm gonna sing in the ambulance.  I'm gonna become a Kung Fu master in my radiation gown. I'm gonna choose happiness.  

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.