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.

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.