Three Weeks till Christmas, Two weeks in the hospital, One house flood,and a partridge in a pear tree.

I keep thinking that life will get less eventful, or maybe we've cashed in all the trials one family is allowed for a lifetime, but that, unfortunatly is not the way it works. December was a good reminder of that.  After an easy going November, we expected your next chemo to go pretty easily.  But 10 days after your first dose, the color began to fade from your cheeks. Your energy level dropped to the floor. Your temperature started creeping up.  You really didn't want to go to the hospital, and I was really hoping to not have to take you, but after a day of a temp of 99 I could tell this was going to get worse before it got better. So we packed you up and went to the hospital.  After a night (and a blood and platelet transfusion) you were a new woman.  You were bouncing off the walls and ready to go home. But nothing is that simple. Once you are checked in the doctors don't want to let you go until your blood counts start showing signs of rebounding.  So every morning I would try to work my magic to convince the doctors that I would take good care of you at home, get your counts every morning if they wanted, manage IV antibiotics...whatever it took to get you home.  But those blood counts of yours did not want to go anywhere. And my convincing and your wheelchair races around the unit were not enough to get the okay to check out.  After nearly a week, with an ANC of 0 and yet the energy level of a monkey I couldn't think of anything else but getting you out of there. . . .

 

 Until your dad called me.  After a long day of everyone gone to work and the hospital and sitters, Dad walked three tired kids right into a sloshy wet mess of a house. 

It. Had. Flooded.

  I got you a sitter and came home to wade through the house. There comes a point where there are no words.And all you can do is laugh or cry in unbelief. At this particular moment, I decided a good laugh was in order.  We put the girls in their swimsuits and started moving our stuff to higher ground until the restoration company showed up and started ripping out carpet and setting up dryers. So, after loading heavy baskets of sopping clothes and linens and our tired, wet kids into friends cars to have dry place for the night, Dad and I headed back to the hospital and had an unexpected slumber party with you. As we all snuggled in warm dry beds, I have never felt so thankful that you were in the hospital. 

I instantaniously had a complete attitude reversal. I wanted nothing more than to keep you in the hospital until I had my nice germ and dust free home to take you back to.  So the family checked into a hotel, picked up Uncle Kurt for the airport for his "relaxing" christmas vacation (Like anyone who comes to our house gets a vacation...bwahaha!) and began the craziest week I have ever experienced.  Three kids in a hotel, one in school 15 miles away, one in a hospital, one guest that you wish you could pamper and spend quality time with, all just a few days before christmas. . . it is making me stress just writing about it. 

But miracles never cease.  And those workers worked their hearts out knowing you had to come home to a finished house.  They worked late hours and on the weekend.  And they had that house ready to move back into the saturday night before Christmas.  And just when it was looking like you may spend christmas in the hospital, your counts showed just enough of a glimmer of rebound that they let you escape. Friends we know and some whom we haven't seen in years, sent some of the most inspired and timely packages and gifts that warmed our hearts and reminded us what this season is about. All the time I missed baking yummy christmas goodies, was made up by plates of desserts brought right to our doorstep. All the time I missed doing last minute shopping was made up by secret Santas and thoughtful friends. Kurts timely arrival, whilst maybe not the event-filled week we had planned, was just what we needed to balance all we had going on, and he stayed with you at the hospital for that whole week, hardly leaving your side. In the end, it will go down as one of the loveliest and certainly the most memorable Christmases on record.

When it comes down to it Kaylee, who really wants an eventless life?  It is all the ups and downs that remind us what is important.  It is knowing hardships that help us appreciate ease.   Nothing could be sweeter than having our family all TOGETHER-happy, feeling good, and completely exhausted. 

 

Running, Cancer and Life

Okay Kaylee, I'm sure you know, I'm no marathon runner.  Not even close.  To tell you the truth, though I've done a lot of running in my life, I've always hated it.  The minute my joints and muscles scream at me from the first few steps before I even get into a rhythm, my will is shot, and I talk myself out of it, wondering why I am bothering to make myself miserable.  This usually leads to giving up in some form.  Whether it's giving up literally {I'm gonna run for 5 mins...eh, 60 more seconds is good enough} or Whether it's mentally {this is useless Kim, you don't need this pain in your life}.  I'm my own worst enemy when it comes to running. I resist it every moment I am putting one foot in front of the other.  I'm sure if you were to ask Mr. Shipp, my cross country coach, he would say I totally wasted my ability, because I simply didn't try.

Last year I knew i needed an outlet, and going to the gym wasn't an option, but I thought, I could take 30 mins three times a week and get in a few miles on the road.  So I strapped on my 10 year old running shoes and hit the pavement. Moments later came my usual mental banter.  But this time, like those two little people sitting on your shoulder shouting in the good and bad, I had retaliation.  I had you.  You were my good little angel sitting on my shoulder reminding me of all the things I'm always telling you: You need this to feel better, Its only for a few minutes and then you are done, you can do anything.

And within moments my mental self destruction stopped.  I had no ammo to shoot back, no excuses.  If Kaylee can do grueling rounds of chemo, surgery and radiation two times over,  I can run a few miles without complaint.  And giving all that mental static up, I've learned some pretty amazing things about myself that I wish I'd known way back in high school when I felt so defeated by track and cross country.  So here is a list, I will aptly entitle like all those 1980's posters hanging around my elementary school of the sort:

 

All I Need to Know About Running I Learned From My 8 Year Old Cancer Survivor

 

The first part is the hardest.  In fact, it's terrible.  Your body doesn't want to do it.  But if you let yourself get past the first bit of pain, your body will adjust, and things will feel smoother.

 

Little adjustments make the biggest difference.  Whether it's a change in attitude or lengthening that stride just an inch more, the result can be a personal record.

 

Always looking down makes time stand still.  But if you take time to look up, you'll see you have a path laid out and sometimes even some good scenery for a distraction. Keeping your head up makes getting to the end not feel so daunting.

 

Getting into a groove can make it seem almost normal.  If you just tell yourself, "I'm doing this" then a few miles in your running begins to feel like a way of life.

 

If you are prepared, you can handle the storms that comes your way.

 

Having a friend who is doing the same thing, always makes things more bearable.

 

If you have the ability and enough energy to get on your own two feet, don't waste time sitting around. Life is too short for that.

 

When you've gone on for a while and just want to stop, actually stopping usually feels worse than pressing on, so you may as well keep going.

 

The body can do amazing things. Believe in that, even if your mind doesn't want you to.

 

Sometimes you get so far out into the middle of things, you feel like you may not be able to make it back home.  You can.  But there's no shame in calling for help.

 

If it feels like its getting too dark, don't worry the street lamps always click on.

 

It's easy to want to give up in the home stretch and feel like you've done enough, but if you push a little, though your body may feel too weak and scream in resistance, you'll finish strong.

 

There are no losers. You got up, you got out there, and you put up a fight. It makes you a winner, no question.

 

 

 

Kaylee, you make me realizes there are so many excuses I have allowed myself to have, that just aren't valid. You've been the best coach without even realizing it, because you lead by example. Sure, I'm no marathon runner, not even close.  But the point is, I could be.  I will never sell my abilities or capabilities short again.  You prove to me time and time again, that with a strong mind, and a faithful heart everyone can achieve greatness.

 

 

A Lotta Love

Holidays at the hospital suck.  There I said it.  You and I both know it's true because we spent Halloween at the hospital, and while they tried their very best to make it fun, you just can't recreate trick or treating with your friends and family in a place that can't hand out candy.  We suggested to them, to maybe not hype up their halloween festivities so much, since it fell kinda flat.  So coming to the hospital over Valentines day, we had absolutely no expectations beyond a few valentine crafts.

I came prepared with some valentines from some of your siblings, me and dad, and some of your cousins. After you went to sleep I pulled out a large stack of hearts I collected from your cousins, and started taping them on your bathroom door. Before long it was full, so i went to the wall, and after that filled up, I moved over to the windows and door.  You have a LOT of cousins!  It was so fun to read their sweet messages and pictures.  I laid out the valentines from dad and me, and some doughnuts for breakfast on your tray and put the rest of the valentines in the mailbox you'd made in clinic. 

You woke up to your heart attack and explored the wall searching for hearts from this person or that, declaring that you were going to be really busy reading all those valentines. As the day went on, we started getting valentines in your mailbox from nurses, and other patients.  We started meeting new people and making new friends.  You got to go to a valentine party and have your nails done, and make cookies, and have your picture taken. 

Halfway through the day, I thought, this is so fun! Why is this so much better than the last holiday?  I realized that this place has a lot of love. People here really know how to love.

  The staff, love their patients, and they love what they do. Parents and kids love the staff because they take their jobs seriously, and work to save these kids lives everyday. The patients love the other patients, because they know just what they are going through.  Parents love those patients too, because it reminds them of their own kid, and they hate to think of any other kid having to go through this too.  The parents love the other parents, because they have sat on that same couch and held back tears of the unknown.  

Everyone here is sailing on the same boat. We know there are storms sometimes we need to get through but we have each other to do it with.  And we've developed this community of people who have made dealing with cancer their lives. That's something we share that not many people do.  And it turns out, that this isn't such a bad place to be on Valentines day. 

Thanks Giving 2012

Corrie Ten Boom was a christian woman who was put into a Nazi concentration camp, with her sister Betsy, for hiding Jews in her house.  I often think of how she felt like she would never be able to be thankful for the fleas in her new barraks even knowing she should feel gratitude in all circumstances.  Then her sister found out that there were never soilders in their barraks because of the fleas, allowing them to have some freedom in their diplorable conditions.

 If someone would have told me back in July, that on this Thanksgiving I would have a heart full of gratitude for all we have, I don't know that I could have believed it.  I was pretty sure back when I heard about this relapse that I was not strong enough to do this all over.  I wondered if the Lord had made some mistake in believing that I could handle this trial again. 

I am so glad I was wrong.  We have this really hard thing in our lives.  You are so strong Kaylee, and I am so glad that I am strong enough to be your mother!  I'm thankful the lord had faith in me when I couldn't, because even though I know he didn't give you cancer, he has paved a little light in the darkness for us to follow, and by following it we can find that there is so much to be thankful for.

 I'm grateful for a month free from hospital and doctor visits, that is no small miracle.  I am thankful for prayers from all across the world, from friends who are close and those whom we haven't seen in years, from strangers, and aquantences all uniting to help you.  I am thankful for a husband who can get four kids ready for the day, dinner made, and the house clean, and after it all, still makes sure that I get a break. I am thankful for parents (mine and dad's) who still take care of me when I put everything into taking care of my own kids. I am thankful to have been taught to see beyond my circumstances.  And I am thankful for a daughter who teaches me to live each day to the fullest, to never give up, and to enjoy and use every bit of good health and energy I have when I have it.

 In actuality I have an abundance of things to be grateful for.  In anything we are given we can take a moment to find the good.  Even in the worst circumstances there is good. There are always things to be thankful for, even if sometimes you may feel like you are counting the fleas. 

A Day in the Life

We spend a lot of time in the hospital.  I am sure that is one thing you will never forget when you are looking back. You miss a lot of school, and birthday parties, and hanging out with your buddies.  Maybe this year will seem like a blur of chemo, shots, and crafts. But you should  know, if you ever forget, that there are a lot of good days at the hospital.  More often than not, thus far, the hospital has brought lots of laughs, happiness, and graditude our way. 

When you are in for a chemo visit, your day usally begins with a heard of doctors waking us from a deep sleep.  I jump up, hair in my face, morning breath, tangled in my covers, trying to act like I had been awake all along as I scramble to pull myself together enough to ask and answer important questions, when in my brain I'm still in sleep mode.  You, of course, pop right up, being used to having people wake you in the middle of the night, and are chipper as can be. 

We hardly ever order breakfast anymore, because you perfer imported (and by imported I mean anything that was not produced or sold within the walls of the hospital) food, so we pour ourselves a bowl of whatever cereal you are craving for the moment and just about then, the hospital school teacher pops her head in the door to see if you want to go to school.  You zip around and get dressed for the day because most Hem/Onc (Hemotology/Oncology) kids wear their own clothes all the time at the hospital. Mrs. Robinson helps you with your schoolwork, plays games, and usually the hospital's resident artist has a fun art project for everyone. 

After school is done you head to Camp Wanna Play, for a craft or a board game.  Then, riding your IV pole like a skateboard you head back to the room, a place you usually don't stay too long.  When one of your friends is getting chemo then you are often busy visiting and playing in each other's rooms.  Miss Amanda, the chlid life specialist, usually stops by to let you try your hand at accessing the port doll or lets you tape her up for a dance party. Volunteers come by throughout the day with games and toys for you to choose from. Being there pretty much feels like a lot of kids being kids, despite what circumstances have thrown their way.  That is one thing that kids are really good at. 

We both know, that it's not all easy.  There are times when we are at the hospital when you just don't feel good.  Those are times when you've been done with your chemo for about a week, and it's doing its job of killing every quickly growing cell in your body leaving your blood empty of all that keeps your body going.  Those are the hard hospital trips.  They are trips we were blessed to never have experinced last year, but this year, like many parents we meet on this journey, it is a commonplace occurance. In fact up until the middle of October we spent time in the hospital every week since we started chemo in the middle of July. We rush into the ER with a fever, and shock all the doctors and lab techs with how off-the-charts low all of you blood counts are (though to us it's nothing new), and then we check in for an unknown amount of time to wait, until things make a turn around and your counts go back up. Its these visits that ground me as to what we are really doing here.  They are the times when I can't help mourning the loss of the childhood you are missing out on.  

It is at these times I feel like this is so hard. I feel frustrated that they aren't making chemotherapy better, they are coming up with better ways to keep the body going through this therapy longer.  And while, I am truly grateful for those medical advancements, that are providing great results in curing cancer patients, It tears me up to watch you, who days before had so much energy, glued to the bed for days upon days.  You see, parents feel like they're so experienced in life and can offer some sort of wisdom to our kids.  But this is something I can offer little wisdom on. Having no real exerience of what you are feeling and going through, is really hard on a mom.  While I have lots of love and comfort, I don't know what it's like to be a kid with cancer.  But as I was reading my scriptures I found this great wisdom in a Father (Lehi) speaking to his son (Jacob):

"And now Jacob, I speak unto you: Thou art my first-born in the days of my tribulation in the wilderness.  And behold, in thy childhood though has suffered afflictions and much sorrow{. . .}Nevertheless, Jacob, my first-born in the wilderness, thou knowest the greatness of God, and he shall consecrate thine afflictions for thy gain{. . .}And thou hast beheld in thy youth his glory; wherefore, thou art blessed even as they unto whom He shall minister in the flesh; for the Spirit is the same, yesterday, today, and forever."

(2Nephi 2:1-2&4)

 Kaylee, I am constantly amazed at what a wonderfully complex bodies we are all blessed with. Bodies that don't need two kidneys, that can be cut open and sewed back good as new, and that have other systems step in to action (along with loads of IV antibiotics) when your body struggles to get it's immune system back on track.  I know that even though last year, and this year you aren't running around the school yard never knowing sickness or sorrow, that you, my dear, are being blessed by God himself even as those whom he ministered to in the flesh. That will forever benefit you. And that, sweet Kaylee, is something you will never want to change. 

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.