maybe i shouldn't have...

There is a book that has been moved from my nightstand to bookshelf and back time and time again. The book? Unfinished Love, written by a mother who lost her eight-year-old son to a brain tumor. I bought the book last summer and I started it then, re-started it in the fall and today for some reason I picked it up again. Maybe because lately I have felt disconnected from things...maybe because I have been longing for someone who gets it...I'm not entirely sure; but for whatever reason I picked it up today and am now wondering if maybe I shouldn't have.

Because it is hitting far too close to home...

And yet as I read I couldn't put it down...I kept telling myself put it away for another day and yet with almost every sentence I felt as though I was reading my very heart's thoughts. I was compelled to keep reading...

But maybe I shouldn't have...

Because it really did bring a surge of emotions and thoughts that honestly I had not felt in awhile, but maybe that is good. I'm not sure. As tears filled my eyes as my heart could vividly remember events in our life that mirror events in the book I felt as though for the first time I could see our life from the outside.

For so long I have lived our lives and wondered what does this look like to others...and even how do other people who are actually living our life feel. How do they feel when their world changes in an instant as the word cancer now defines their choices, decisions and reality. Because there is no guide to navigating being a parent of a child with cancer...there is not a 10 step plan for parenting a child with cancer. I guess because in ways each of our journeys is different, but in countless ways our journeys are the same.

I have lived two lives. The first very typical and normal, much as I had pictured in my mind as I grew up - marriage, college, career and kids. This book is about the second life - the life that materialized on a day that started no differently than any other day and ended as no other had before. It contained a moment that changed our destiny - the moment we entered the world of pediatric cancer. ~ Unfinished Love

I too feel that I have two lives. One before February 7, 2006 and one after...it's as if I could never reclaim the life before no matter how hard I try and the one I have now is forever marked, by a word...cancer.

I remember well trying to "keep it together" when Camryn was in the Huntington Hospital ER and the word leukemia was first spoken...I remember talking on the phone to my best friend about sub plans for the next day, but never imagining that it would be a lot longer than that...

It was a strange feeling to have gained such frightening news just moments before and yet be expected to function as if everything were normal. Our reality had entered a new dimension, while everyone around us remained oblivious to our plight.

...I was amazed as his mother rattled off his medications to the new nurse just coming on duty. Would this be my new life? Would we be living in the hospital indefinitely, having an uncommon knowledge of five-syllable medications? I shuddered to think this. ~ Unfinished Love

As I continue to read I am sure I will find my heart on page after page...I guess it is a therapy of sorts. To find a common ground, unlikely as it may be.

And begin to see that...

These lessons gave me a new life. Along with this new life came a new pair of eyes that now see past this world and all it holds. They are focused now on an eternal view that holds so much more than I allowed myself to ever see in my first life. Free now from the desire to have the "things" of this world, I have been changed from the inside out. Priorities of the past - stuff - have left my heart. Growing closer to God, helping others and sharing our faith have become the new priorities. ~ Unfinished Love

So maybe I should...keep reading and keep trying to embrace this new life and the lessons it is teaching me...

Because it is unfinished...

prayer request...

At Camryn's last clinic appointment it was determined that on May 4th she would have an echocardigram to check on the blood clot on her line as it has been six months since the last echo.

The more I have thought about it the more I have felt compelled to ask for prayers...

Depending on the outcome of the echo it might be possible to end Camryn's nightly Lovenox shot and I probably don't need to tell you that would be a HUGE encouragement to Camryn.

May will mark a year of nightly Lovenox shots for Camryn, yes three hundred and sixty-five of them; so the thought of maybe, just maybe being done with them is a big hope for us. Okay a really big hope for us.

Thank you in advance for praying with us and as always we have been humbled by your thoughts and prayers...

Believing.Hoping...

a little package...

I never quite know what is going to trigger tears...honestly throughout these past four years there really is no telling when tears will come and when they won't. Sometimes I am shocked that I get through certain moments without tears and other times I am caught off guard that the tears come...today held a tear filled moment, it had nothing to do with Camryn and everything to do with her at the same time.

When we arrived home today from our adventure of Saturday morning there was a little brown box on our porch as I got out of the car and head to unlock the door and start the process of getting the kids in the house and such; I looked down at the box and the tears just flowed...

The little box was addressed to Miss Camryn Mikels, it was the return address that stopped me in my tracks...Uncle Paul. The first time I had seen his name not followed by Aunt Frankie. My dear uncle sent Camryn a little package for her birthday...it was precious. He had cut out sweet little pictures and put them on the front of the box and wrapped a little gift so carefully and sweetly. As Camryn opened her gift tears just flowed...she asked me why I was crying and I said I was just overwhelmed by Uncle Paul's sweet gift and I missed my Aunt Frankie. The gift? A little tea cup that I'm sure was my aunt's...a dear treasure. Camryn was so thrilled and carefully took it into her room and put it on her shelf where she keeps special things. I was not ready for that today...but, I am so overwhelmed by my dear uncle's sweet spirit.

And I am reminded how incredibly much I miss her...

I am so thankful for her and the moments, memories I have with her etched in them. Today was just a reminder that you never really stop missing someone...that forever you carry them as part of yourself, a richer part.

For all the times when I wish I had answers to life's alluding questions today is one in which I am just thankful for what was given...a precious little tea cup, a priceless little package and memories of a lifetime. Yes, at times I am not okay with all that has transpired in our lives due to the word leukemia...it did rob me of one of my most treasured people, but for today it did not get to take the memories that the Lord allows me to tuck safely in my heart...and even more than that...

A hope forever.

Some days Jason and I long for our old life...a life of simplicity and normalcy. When we could go and do whatever, whenever...we hung out with our friends with children, we went to BBQs, we went to birthday parties, we had social activities. Now, we spend a lot of time the four of us...we do not have countless things to do on the weekends. Oh here and there we have occasional plans, but it is mostly with family (for which without we'd be lost)...we miss our friends, we miss the life others are living.

Some times I feel a twinge of envy when I hear people talk about their kid's activities or the other things that they have going on that are centered around their kid's interest or such. We don't have that...we used to and we dreamed of it. Camryn would love to have things to do outside of home...gymnastics, classes, play groups, teams...I guess those things will come in time. We just wish that time was now...

I guess today I was reminded that whether this is how we wanted it, dreamed it to be or not our Lord will be in control of all of it. A little package from one of the greatest men I know who means oh so very much to me reminded me of that...because life right now isn't how he'd like it to be, but without a doubt he believes that the Lord is in control of all of it.

Thank you Lord for the little package wrapped in hope forever...that you know our hearts, our deepest longings and some how because you are God you are weaving all that into something beautiful.

Beauty will come...in fact today I found it in a little brown box.

and the grand total...

is four...

Camryn as of tonight has lost four teeth...two bottom and now two top! She's got the cutest toothless grin ever...granted she has teeth coming in, in all directions and her mouth is itty bitty and by the looks of things she'll be good friends with her dentist. :)

**she didn't want to take a picture tonight...but, i'll be sure to snap one tomorrow**

this is what it is...

You know when you've been doing something for over 1,500 days there are bound to be those days and as you go hopefully those become fewer and farther between them. Today, I won't lie has been one of those days. Honestly, haven't had one in quite awhile so I guess it's about time...

Camryn's labs look fabulous and she is doing fantastic, really...she continues to do what the doctors want her to. Right now there is a little dance going on with Camryn's liver enzymes and figuring out what is causing them to be elevated...the GVH or the medicine she is on for GVH. Doesn't that seem to be the case with medications the thing they are fighting can have side effects that are problematic...love that. Camryn's numbers are nice and strong, in fact her white count and her ANC are really great! Her red blood cell numbers along with her platelets are great...all in all on the lab sheet Camryn is soaring.

Yet, some days she soars a bit low...

Some days the weight of taking over seven medications daily is overwhelming...

Some days the nightly lovenox shot is just too much...and some days it is hard to find a non-bruised spot on her little thighs.

Some days the balance between being a cancer fighting six-year-old and a healthy six-year-old is precarious...

Some days it is a battle...and the war is no where near over.

Because this isn't a race...there is no fast lane. I wish there was, oh how I wish there was. Camryn is almost eleven months post-transplant, her second one and there is no end in sight to all this. And that's the hardest part for her heart...when can she stop? When does it end?

Jason and I are both profoundly proud of Camryn, there are no words to adequately describe how much awe we hold for her in doing all that she has to do...no child should have to. And it is a struggle for her to watch her brother sail through the evenings...no line changes, no line flushes, no shots, no medicines. In no way does Camryn wish these things on him, but she struggle to be the only one. I don't blame her...

Camryn's world is an oddity at times...oh she navigates it with a grace that only comes from her Heavenly Father. But, it's weird to be in a world with "healthy" people...to have to alter your eating habits to account for medicines, to have a line and a rash that other kids don't. I'm sure somewhere in her heart she wonders...why?

And even on days like this when the news from the doctors is great...you can find yourself wondering that dead-end question.

Why?

I wish at times that question did not allude me...allude us. But it does, it leaves us longing for more and yet it leaves us handing the question over time and again to the Lord knowing that only He truly knows why.

In the midst of the whirlwinds of life there are happy, amazing moments when we clearly see the Lord opening doors and lavishing His goodness on us, even in the midst of leukemia and post-transplant life. This past year I have been teaching part-time which has been great for this year, but we knew it was not a forever deal mostly because someday we hoped that Camryn and then Wyatt would join me at school. Well, it began to look like next year I would be part-time again which was fine; but I really began praying that the Lord would provide what was needed, not necessarily what was wanted. You see we will not know until the last minute if Camryn can go to school for first grade, so I really wanted to have "my ducks in a row" just in case the answer was yes. The Lord continues to work and as of now some doors are potentially open and there are some potential possibilities for all of it to come together and we are so thankful...

These past four years have not been what Jason and I had planned...not by a long shot. We would never have written our life story like this, but this is what it is...

Much has been lost...

Much has been gained...

And yet on those days I have to remember that yes this is what it is; but my Lord is bigger than that. I don't understand it always, really I don't understand it a lot; but I do know that someday it will be redeemed. It will be reclaimed and all that was lost will be returned...

Guess some days I wonder how long Lord will this be what it is...

A little six-year-old girl living a life she never asked for, fighting a disease that is horrible and yet living with everything she has...yes, I wonder how long, how long will this be her story...

Probably forever...

Thankful that forever is but a blink compared to eternity...

a magic wand...

Some days I really wish I had a magic wand to wave and erase the hurt of now for my sweet baby girl...

Just one of those mornings when I wish she was heading to school instead of clinic. Lots and lots of tears this morning...she is so tired of all of this.

Just one of those days...

slower pace...

This weekend life as seemingly slowed a bit and it is wonderful...

The past month has been quite busy for us through March and April...anniversary, birthday, San Francisco, Easter, Camryn's birthday. Whew, what a whirlwind of fun and oh so enjoyable! But now we head the slower part to our year...spring is busy through these weeks, but now life takes a slower pace and we like it!

Friday night was spent at home watching the Dodger game...yep, this Mikels family is HUGE Dodger fans. The kids love watching the games and cheering for their favorite players...it's too fun! We had a lazy Friday night and sometimes I think that is the perfect way to end the week...although I must admit before kids and before leukemia I loved having Friday night plans. Loved having "something" to do...now, I like the nothingness of it. A weird change for me, but very much where I am now.

Saturday the kids and I ran to the teacher supply store, it's Open House this week for me and so I needed a few items to spruce up my room...the kids like going there as there is lots to look at and see. We came home and played a bit outside while Jason and I worked on cleaning up our backyard. Sigh...our backyard too such a beating while we dealt with the in's and out's of hospital life and such. We used to have a great backyard, lush grass and beautiful flowers...and now, we'll it's taken a beating. I guess we had more important things to deal with...

So now we are going to try little by little to fix things up a bit. Lately Jason and I are both feeling like it's time to start putting our life back together...our home. For quite awhile it's been survival and trying to just get by and now the feeling is that we are here and let's live...live right here where we are.

Today we spent time working on Camryn's homework...the kids put on puppet shows and we had a wonderful day! Days like these make me really believe that there is hope throughout this...

Little by little...

Step by step...

Whether it is a slower pace or not, we'll get there...Camryn will get there and throughout it all we thank the Lord for days like these that allow us to catch our breaths and simply say...

"thank you"

wonderland...

Camryn is smitten with Alice in Wonderland...I believe it all started sometime ago when the Disney Channel showed the movie and my Auntie Donna fulfilled the Christmas wish by finding it on dvd. And thus the fastination with Alice began...

We love us some Disney Princesses in our house, always have...forever Camryn has loved Belle and I believe she always will, but the story of Alice the imagination, the fun, the crazy elements appeal to Camryn and now we have a new favorite. As many of you know Camryn plans her parties well in advance and forever her 6th birthday was going to be her Ariel party...and sometime in January it quickly changed to Alice. And thus the fun began.

We had a Alice in Wonderland party complete with a Mad Hatter's Tea Party table set up for the kids...crouqet...crafts of tea pots and tea cakes..."eat me" and "drink me" signs. Yes, I love me a party...really, I quite thoroughly enjoy party planning especially for my two kids...I love taking a theme and running with it. So, in honor of Alice the attempt was made to make Camryn's birthday wonderland. The weather did not cooperate all that well and much of the day was spent indoors which worked out better than I imagined...

And without further ado...

Treats and Desserts...



Mad Hatter Tea Party Table...Camryn had hoped to invite two of her friends from church that she has not seen in months...Emily and Kiley. Oh what fun these three girls had...they are the same age and Camryn was beyond thrilled to see friends and as always she LOVED having her cousins here and her little friends Eisley and Carson...



Of course now trip to wonderland would be complete without a game of croquet. I believe we introduced a whole new generation to the game and the kids quite enjoyed it. In fact Camryn wanted to keep the sets (borrowed from my sister and parents), I believe we will be playing croquet again very soon.



Camryn and Emily...born the very same day just a mere 3 hours apart. Camryn was so excited to have Emily at her party, she has missed her friend. We are so thankful for their friendship and we have treasured Emily and her parents as they have sent Camryn cards and little gifts throughout the months apart. Thank you Emily for being such a sweet, treasured friend of Camryn's.



A little game of Pin the Smile on the Cheshire Cat...I believe Wyatt cheated as he won, yes he does have a competitive streak and oh course I have no idea where that comes from.



Happy Birthday Camryn Lee!



Yummy Chocolate Cake...a girl after her Mommy's heart!



Wy and Ry...the bestest of friends.



Camryn and James...the bestest of friends.



After Camryn opened her gift from her brother she said, "Come here Wy, let me give you a hug. I love you." A precious moment amongst a very fun day...



Whew, what a day spent in wonderland...we had such fun, but most of all the birthday girl loved her day and was very thankful to her family and friends who made it so very special.

:::::::::::::::::::::::::::::::::

And as promised...the room make-over.







Here's hoping that Camryn's next year is full of imagination and wonder...

amazing six year old...

Six years ago I held a precious baby girl for the first time and had I known then what I know now I would have kept her in a bubble...trying with all my might to keep her safe and sound. But, you know even in that bubble leukemia would have come twenty-one months later. It is incredibly hard for me to grasp that the only birthday not marked by leukemia was her first...

And now here we are on her sixth...

Camryn Lee is six.

Honestly, it is taking a lot for me to swallow and grasp those words...six. When Camryn turned five the future was so completely unknown and I guess for any year it is, but for Camryn transplant #2 was looming and the outcomes were so unknown. And now a year later...

Camryn is here, living and making our world brighter just by her being in it. She is almost through one year of school and is blossoming completely. She has lost 3 teeth and is on the verge of losing 3 more! She has grown...she is talented...she is smart...she is well, completely amazing.

Camryn Lee...

There is a song I love called, "If I Had Only Known" and sometimes sweet girl I wonder how differently your life would be these six years had you not had the foe you have. Had you been able to be a kid fighting make believe villians and foes instead of a very real one that never plays fair. I often find myself in complete amazement at the strength bottled up inside of you. And your heart...your heart is a treasure beyond measure. You have taught your mommy much and for all the lessons learned I am sure that you have taught me more than I have ever taught you...

Your laugh makes the fears, worries and anxiety of the future fade away. Your smile carries heaps of hope...

For you see sweet girl if I had only known what a gift these past six years have been and the treasure you are I would have tried to memorize each moment...for each day spent with you is the gift of a life time.

We love you...more than any words can properly express.

Love you...

Daddy, Mommy and of course Wyatt

catching up...

So I'm finally going to get the Easter pictures up...I could list a million reasons why I haven't gotten to it yet, but the best reason...



These two faces...I have been off work all week and you know there are much better things to do with these two and I have thoroughly enjoyed it! Here are a few more of my favorite shots from Easter.

Darling kids ready to go to church...



Look what we found...





Hunting Easter eggs is certainly a highlight for Camryn and Wyatt, they love it! It is such fun watching them search and search and try to "win"...I really enjoy it. This year was especially fun...

And this group of kids, well they just make family incredible...







Lots of fun at Auntie Heather and Uncle Nick's house, eating good food, being the crazy cousins they are and of course hunting some more eggs! We are so incredibly blessed by our families, truly we are blessed beyond measure.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

In other happenings...

* Today we sold items at our first garage sale...we have the great garage clean-out last week and in great timing Rob & Devon invited us to participate in a garage sale with them. It was fun, made a little money; but most of all got rid of a ton of stuff! Devon and I sat and chatted and marveled at the things people will buy...it was a nice way to spend the morning, although I could have done without the 5am alarm! :)

* We are also making preparations for tomorrow, Camryn's birthday party! We are very excited!!! Should be lots of fun...I'll be sure to post all about it.

But for now suffice it to say that my mommy's heart cannot believe our sweet baby girl is going to be six...So many things have happened throughout her six very full years and every year her birthday is full of meaning and I expect tomorrow and Monday to be wonderful days...full of the celebration of a pretty amazing girl.

Simply the best...

"just" labs...

It's Tuesday...so as you know if you follow us it usually means a clinic visit of some sort, well not to disappoint you we headed to clinic this morning for labs and labs only. Being that I am on Easter vacation this week I took Camryn down and since it was just a quick lab trip we took Wyatt along for the fun. Camryn absolutely loved having Wyatt along, seriously he is just the treat to brighten her day...so as we drove down to UCLA this morning Camryn had her buddy chatting and chatting with her. I'm sure it made the trip so much faster and much more enjoyable.

We got to clinic and just went to procedure which is great because one we don't have to pay a co-pay and we had paid 4 weeks in a row so we were ready to have a co-pay free week. But the better reason is Camryn's most favorite two people at UCLA were found there...Nurse Charlotte and Dr.M. Nurse Charlotte was ready and waiting for Camryn and they chatting while Camryn help gather the supplies necessary for a lab draw. While she was gathering her supplies Camryn came running over and whispered, "Mom Dr. M is in that room, I hear him and I see him!" Oh my goodness she was excited...it's a funny thing the connection Camryn has to Dr.M, it's priceless! As I watched Camryn gather her supplies I admit it makes me chuckle a bit watching Camryn act like a mini Nurse Charlotte. Once the labs were drawn we said hi to a few other people and were gathering our things to head home and who should come out of the room and come say hi...Dr.M.

Seeing Dr.M was wonderful, an official doctors visit. He confirmed the various things about Camryn right now, her rash, med changes and such. He is just the best. As we talked he also confirmed that "Camryn is right where we want her....if you have people praying for her healing than the GVH is a complete answer to prayer." We talked a bit about GVH and I expressed to him that it is so hard to battle this and explain to people that this whole GVH thing is really good, because honestly it feels really bad; especially for Camryn. Dr.M smiled and said the GVH is the key to it all...really the GVH is even more important than the transplant for Camryn. He told me about a patient that battled GVH for two years and is now in a solid remission, he said that's what he would like to see with Camryn. A smile and a sigh by me...

There is no doubt in my mind that Camryn's team at UCLA is the best ever, they are. But, sometimes the realities of getting Camryn well are just hard and they stink. So I know that GVH and the balancing of medicines is what Camryn needs for long term health, but the day to day life of this stage is rough. But, slowly but surely we'll get there...

As Camryn, Wyatt and me walked to the car I said a little prayer of thanks...thankful for the Lord allowing me that "chance" encounter with Dr.M. To hear straight from the man who has walked with us for almost four years...to hear from the man who means so much to us...to hear from Camryn's biggest cheerleader and biggest fan. I was so completely thankful that Dr.M was there...I smiled on the way home and just continued to say thanks. I'm realizing that this road is not going to just be done anytime soon, but I do know that the Lord meets us throughout the road and I cannot say enough about what today meant for my heart.

We got home and I did some yard work while the kids played outside, it was a beautiful day!

We got Camryn's labs and they look great...and no med changes this week. Woohoo!

I was going to post about Easter, but Jason has the pictures on his laptop so that will have to wait...soon I promise!

And now I have a pile of the cutest clothes in the world staring at me to fold...cute because they belong to the best kids in the world. Kids that bring a smile to my face, just by being in my life...

Guess I best be getting to that folding...

But, for today hanging out with my kids was more than enough. Thank you Lord, thank you.

ten months & happy easter...

All rolled into one...

Yes, today marks ten months since Camryn's transplant and it is Easter Sunday...pretty fitting don't you think? I happen to.

We have enjoyed a very, very full day which I will post about hopefully tomorrow, complete with pictures. But for today, we celebrate the greatest holiday ever in my opinion...and savored the moments spent with family. And throughout the day a thread was woven of a ten month journey and all the moments spent with Jesus by Camryn's side, our side.

Thankful for the glory of it all...

Our risen Lord...

And ten months...

Amazing.

why...

We rode into town the other day
Just me and my Daddy
He said I'd finally reached that age
And I could ride next to him on a horse
That of course was not quite as wide

We heard a crowd of people shouting
And so we stopped to find out why
And there was that man
That my dad said he loved
But today there was fear in his eyes

So I said "Daddy, why are they screaming?
Why are the faces of some of them beaming?
Why is He dressed in that bright purple robe?
I'll bet that crown hurts Him more than He shows
Daddy, please can't you do something?
He looks as though He's gonna cry
you said he was stronger than all of those guys
addy, please tell me why
Why does everyone want him to die?"

Later that day the sky grew cloudy
And Daddy said I should go inside
Somehow he knew things would get stormy
Boy was he right
But I could not keep from wondering
If there was something he had to hide

So after he left I had to find out
I was not afraid of getting lost
So I followed the crowds
To a hill where I knew men had been killed
And I heard a voice come from the cross

And it said, "Father, why are they screaming?
Why are the faces of some of them beaming?
Why are they casting their lots for My robe?
This crown of thorns hurts Me more than it shows
Father, please can't You do something?
I know that You must hear My cry
I thought I could handle the cross of this size
Father, remind Me why
Why does everyone want Me to die?
When will I understand why?"

"My precious Son, I hear them screaming
I'm watching the face of the enemy beaming
But soon I will clothe You in robes of My own
Jesus, this hurts Me much more than You know
But this dark hour I must do nothing
Though I've heard Your unbearable cry
The power in Your blood destroys all of the lies
Soon You'll see past their unmerciful eyes
Look there below, see the child
Trembling by her father's side
Now I can tell You why
She is why You must die"

~ Nichole Nordeman

Thank you Lord for the goodness of this Friday and the glory of this Sunday...

three hundred...

Three hundred days since transplant, the last benchmark until...6.4.10 a year.

For all the ups and downs...

For all the moments of joy mixed with despair...

For all the what if's and could've been's...

For all the smiles and tears...

For all the precious days...

It has been three hundred of the most amazing days spent with the Dynamic Duo.

During the past three hundred days...

* Camryn started kindergarten

* Wyatt turned three

* Camryn has gained 16 pounds and lost them all

* Wyatt has been potty trained

* Camryn has learned to read and write

* Wyatt now sleeps in his big boy bed

* Camryn and Wyatt have grown to be the best friends ever

Yes, there have been highs and lows...but honestly the highs far out weigh the lows, because...

Well, because Camryn is here. Simply, the gift of her life and the moments that Wyatt's "juice" heals her are enough. Enough.

Thankful for the past three hundred days and oh so hopeful for many, many more.