finished...

Well, almost...

February is almost over, by far the toughest month on the calendar and as much as I had hoped that this year would be different it wasn't.

The month began with hope and anticipation that maybe this time around we would get through February without a major event. I knew that this month would be hard just because of reliving various memories and moments that had marked Februaries of the past years...really the last four years.

The highlight of February was Camryn's health...truly she has had a good month. We got to say good-bye to steroids this month...WOOHOO! Camryn made it through February with only one clinic visit...YAY! Camryn is still on track of her weaning and is doing really well. So far no real signs of GVH and we are hopeful that this will continue. Camryn has also made it through her week of the cold well...very well. We've been able to get her through without antibiotics and honestly her system seems to be fighting hard and winning...YES! Really, this has been a good month for Camryn, minus one hard dentist appointment she has done super this month. And a quick mouth/teeth update...her teeth are looking lots & lots better...thanks to a new toothbrush that is much easier on her teeth than mommy & daddy brushing them. Camryn's teeth look SO much better and brushing teeth is no longer a battle! So I guess in light of Camryn February held victories and for those we are extremely grateful!

I got home today from my aunt's services up north...her services were absolutely beautiful, much like her. As I sat and took in an amazing memorial service and listened as my cousins and my sister and then myself spoke about a woman that we all adored I just smiled...truly my aunt is one of God's most precious gifts to my life. As tears came along with smiles I found myself incredibly grateful for the legacy that she left on my life...the many gifts that she gave me, but most of all the gift of herself. As I sat next to my to my mom and my Uncle I felt such a sense of family, such a sense of the gift of family...that the Lord blesses us beyond measure with these amazing people to love and who love us.

During my aunt's service a video montage of pictures played...as I smiled, laughed at the many great pictures one picture caught me and the tears just flowed. The picture was of my aunt holding Camryn at a family reunion in 2005, before Camryn was sick...before leukemia became part of either one of their lives. I cried...as I saw my aunt's amazing smile holding my little Camryn who was not even 18 months old. That picture is now a gift to me...two fighters who have fought a disease that doesn't play fair, but yet survivors who believe in Jesus and His love for them.

At the graveside my dad spoke about how my aunt's perspective on dying made it easier for all of us...she was at peace, she knew where she was going, she knew that Her Savior was awaiting her. And as my dad said, we miss her greatly...but if she had the choice to come back she wouldn't because she is experiencing the fulfillment of her Savior and that is the most precious gift of all.

At her service her one of her favorite hymns was printed in the program. A hymn that meant so much to her these past almost 9 months of battling leukemia...

Bow the Knee

There are moments on our journey following the Lord
When God illumines every step we take.
There are times when circumstances make perfect sense to us,
As we try to understand each move He makes.
When the path grows dim
And our questions have no answers, turn to Him.

Bow the knee,
Trust the heart of the Father
When the answer goes beyond what you can see.
Bow the knee,
Lift your eyes toward heaven
And believe the One who holds eternity.
When you don't understand the purpose of His plan,
In the presence of the King,
Bow the knee.

There are days when clouds surround us,
And rain begins to fall,
The cold and lonely winds won't cease to blow.
And there seems to be no reason
For the suffering we feel,
We are tempted to believe God does not know.
When the storms arise,
Don't forget we live by faith and not by sight.

And now with February almost finished...

This song takes a new meaning...

I miss my aunt terribly...I am thankful for Camryn's good month of health...I hate all that leukemia has done...I am grateful for little Wyatt...but, most of all my Savior who continues to love me and hold me along this path.

heaven...

He will do what he promised he would do. I will make all things new, he promised. I will restore what was taken. I will restore your years drooped on crutches and trapped in wheelchairs. I will restore the smiles faded by hurt. I will replay the symphonies unheard by deaf ears and the sunsets unseen by blind eyes. The mute will sing. The poor will feast. The wounds will heal. I will make all things new. I will restore all things. The child snatched by disease will run to your arms. The freedom lost to oppression will dunce in your heart. The peace of a pure heart will be my gift to you. I will make all things new. New hope. New faith. And most of all new Love. The Love of which all other loves speak. The Love before which all other loves pale. The Love you have sought in a thousand ports in a thousand nights. . . this Love of mine, will be yours.

~ Max Lucado

Contemplating a lot about heaven these days...maybe because this weekend I will travel up north for my sweet aunt's memorial service. Maybe because the month of February is almost over. Maybe because next week will mark the birthday of my twin nephews B & E...

Found the quote above and it gave me chills...

Oh the glory of it all...

The beauty of it all...

Oh if only, if only we really grasped, we really knew...

The gift that awaits us...

Heaven.

cold update...

This week we have been battling colds...

So far Camryn is doing well, she started the week with a runny nose and cough; but now thankfully she is doing better. And the praise of all praises...Camryn has stayed fever FREE! We are so thankful! Honestly, it will be quite an accomplishment for Camryn's system if she can beat this cold without any help from antibiotics or trips to the hospital. Work Cam's system and Wyatt's marrow!!

Wyatt is doing better too. He is such a little stinker when he's sick, but he is doing well. So far I'm proud to say that he is doing much better and we are seeing our stubborn little Wy Guy more and more. :)

All in all we are making it through and it may seem like a small, normal feat and really it is a taste of normal, but there is nothing small about it. Every little hurdle crossed is a big deal for Camryn and really all of us.

Baby steps...yes, even colds are baby steps!

i need some beautiful...

Yesterday Camryn and Wyatt began battling a cold, the same cold that I brought home with me from my visit up north. We have played it pretty low-key this weekend and thus far Camryn is staying fever free! If Camryn gets a fever we have to make the dreaded call, which inevitably means packed bags and days spent at the hotel, I mean hospital. So we are thankful...thankful that so far it's a cold. And we are praying it stays that way!

In light of the cold we didn't know if we would get to make it to a very special event tonight...this date has been circled on the calendar for months and we just knew two certain little kids would be heartbroken to not go.

Where did we go?

To hear our most favorite choir girl in the entire world sing...and let me just say that for the record Camryn just knows that Kelly is by far the best in the whole choir!

As we sat listening to amazing music and smiling, waving and clapping for Kelly; tears filled my eyes. It has been a while, alright a long while since I have sat in a church and listened to amazing music. The songs were just an amazing blend of sound and words...simply beautiful worship.

The pastor got up and welcomed people and said the usual few words, but something caught my ear and heart...

"I need some beautiful..."

My heart just stopped and paused. In the midst of these past few weeks I felt as if my heart echoed the same sentiments...I long for some beautiful...

And then the music came and it was overwhelmingly beautiful...amazing thoughts of God's unending, amazing love and the praise to which is due His name. Oh, it was beautiful...

Thanks Kelly for inviting us to something beautiful...for allowing us to be a part of your life. We sure do love you!

May the beauty of tonight follow into tomorrow and the days after...Hope you find some beautiful too!

what it robs us of...

Cancer...

Leukemia...

The question swirling in my head is what it robs us of?

Because quite frankly this weekend I feel like the answer is...a lot.

My heart is heavy this weekend as I wrestle with the realities of leukemia. My sweet aunt entered into heaven yesterday morning...after about 9 months of dealing with leukemia. I wish I had the words, but I don't.

Sometimes I feel as though the realities of leukemia are inescapable...that they will always be. I know in my head that a day will come when the weight will feel lighter, but for today it is heavy.

A year ago today Camryn's clotting factors were out of control, she had bright pink wrists of tape holding the IV's that we were trying desparately to save until Monday when she would have her line placed...

Seriously, a year ago?

And right now she is chatting up a storm with her little brother and thoroughly enjoying this life, her life.

For all that Cancer has done and continues to do...

What Cancer Cannot Do

Cancer is so limited,
(Yet In All These Things)

It cannot cripple love, it cannot
(We Are More Than Conquerors Through)

Shatter hope,
(Him Who Loves Us)

It cannot corrode faith, it cannot
(For I Am Persuaded That Neither Death Nor Life,)

Destroy peace,
(Nor Principalities Nor Powers,)

It cannot kill friendship, it cannot
(Nor Things Present Nor Things To Come,)

Suppress memories,
(Nor Height Depth, Nor Any Created Things,

It cannot silence courage, it cannot
(Shall Be Able To Separate Us)

Invade the Soul
(From The Love Of God,)

It cannot steal eternal life,
(Which Is In)

It Cannot
(Christ Jesus Our Lord) Romans 8:37-39

Conquer the Spirit.

~ From a blog on the American Cancer Society website

And for what it robs us of...

That much more He will redeem...oh the glory my sweet aunt is experiencing. Knowing that she is whole, complete and well gives me such peace...oh how I miss her and hate what leukemia has robbed us of.

But I hold on to what I know to be true...

Nothing will ever separate us from the love of our Lord...nothing.

the weaning...

Camryn is in the process of being weaned off of her cyclosporin...one cannot simply just stop taking this med. The weaning is a slow, delicate process as all the while signs of GVH are watched for.

Yesterday Camryn's labs came back great...to quote Camryn's nurse practitioner "they look great!!!" WooHoo! Her levels are pretty stable these days, which is exactly what is wanted; no real changes at all. Her white count continues to inch up and once she is completely off of the cyclosporin it should take a jump. Camryn was weaned off of cyclosporin in the summer and that is what brought the GVH rash on in full force, so we are pretty prepared that maybe some GVH might crop up, which really is okay.

Camryn also has a loose front tooth...we are working on wiggling, jiggling, trying with all our might to get it out. But, the sucker is being a bit stubborn. We are continuing to work with Camryn on her teeth/mouth issues, I won't lie it is an uphill battle. She hates anything having to do with her mouth, honestly, I think it's a reverting back to some very dark and hard days in the hospital dealing with mouth care that has her so scared. Guess there are many little things about this journey that just aren't normal or even right...

But, Camryn continues to do well in light of all the circumstances that she doesn't love. She continues to make the best of everything...

Wyatt is doing well these days too. He has some moments of "terrible three's" and wants to exert his opinion verbally and very loudly. He continues to enjoy his sister completely...in fact right this minute they are playing princesses and Wyatt of course is her prince charming. He really is an easy boy, unless he is tired and hungry and then watch out...reminds me of someone I know, oh wait it's me. :) He adds so much to our lives that I find myself just wondering what the days hold for him...

This past year has held many ups and downs and throughout out it all one thing remains that no matter how much time passes, no matter how many meds are weaned, no matter how we grow...we cannot escape who we are. We are a family of four who battle cancer in some ways...

As Camryn told Wyatt the other night...

"Oh silly, you're more than my brother you are my donor."

And then she went on to say...

"And I'm the survivor."

2.17...

Forever etched in my heart is the events of a year ago today...

Camryn's labs had been struggling and a bone marrow aspiration was the only way to rule out that her leukemia had returned. As we sat and listened to Dr.M explain the possible outcomes and the reality that most likely her leukemia had returned the bottom of our world fell out. There are no other words to describe it.

And yet today...

A year later as I walked into the medical building to have Camryn's labs draw memories came flooding back. Memories of staring out the window as Camryn was resting after her aspiration with tears running down my cheeks, searching for answers as to "how could this have happened?". Wrestling with the realities of what this all would mean. Trying to grasp the fact that yet again our little girl was going to battle a foe that did not play fair and a foe who would do everything in it's power to completely consume her.

We walked into the procedure center and had Camryn's labs drawn and it's as if the Lord kept reminding me...that today is a different day. That where Camryn is today is an absolute gift...a miracle.

The journey of this past year has been a roller coaster and quite possibly the toughest year throughout Camryn's entire journey. I wish I could say that the worst is behind us, but that is something that I cannot say. What I can say is we have learned to live day by day...grateful for the moments, grateful for the laughter and learning to live with the tears. Knowing that we are not promised an easy road, but we are promised the Lord's faithfulness throughout the journey.

I will not sugar-coat it, the journey through childhood cancer is quite frankly a hell all it's own. And throughout this year we have found ourselves battling through feelings that we thought we had overcome long ago only to find ourselves face to face again. Yet, thankfully Camryn is on her way to day +300, her labs are stable and the weaning of medicine has begun. Oh, how I wish it were a quicker journey, it just isn't.

There is no hurrying during this journey...waiting, patience, faith, trust. Yes, those are the words, but quick, hurry...nope not so much.

A year ago we put Camryn to bed wondering what the next few days would hold...and tonight we put her to bed believing that the next few days hold much more hope.

A year since relapse...

What a difference a year makes.

temporary home...

Not quite sure I have the words...

This past weekend was so incredibly bittersweet. Bitter in having to watch leukemia rob my sweet aunt of her strength. Sweet in getting to spend some dear time with her and in essence say...until heaven.

I adore my aunt, truly she means so much to me. And honestly I admit that I have over the course of my life taken her for granted...guess I just always assumed she would always be there. That forever she would be there to smile at me and I would always here that unmistakable voice...

There is much to be thankful for in my life and one of the most precious blessings is truly the days, moments and memories I have with her. So this weekend it was precious to be able to see her and talk with her for the last time. To tell her how much I love her and how thankful I am for her.

She has given me much and I am so grateful for the almost thirty-five years she has invested in my life...

Old man, hospital bed
The room is filled with people he loves
And he whispers don't cry for me
I'll see you all someday
He looks up and says "I can see God's face."

"This is my temporary Home
It's not where I belong
Windows and rooms that I'm passin' through
This was just a stop,on the way To where I'm going
I'm not afraid because I know this was
My temporary home."

This is our temporary home ~ Carrie Underwood

For all that my aunt has taught me, probably most poignant is about her incredible love of Jesus, her Lord. While I was sitting in her living room my cousin handed me an article my aunt had written about her journey with AML. As I read tears filled my eyes, because she was not writing about how unfair it was; but rather about growing closer to her Lord and gaining strength from him. Amazing words...words that rang so true in my heart as my little girl journeys with APML.

This is her temporary home...she is ready to see her Jesus and experience the glory of heaven. But, as I write this I miss her already...guess that's the struggle that inasmuch as it is her temporary home it is mine too, but I don't get to go home yet.

Until heaven Aunt Frankie...I love you.

close to home...

This week has been quite a whirlwind...

Coming off last Friday and the great news of no more steroids Camryn has been doing fabulously! Honestly it is wonderful to see her off those awful, yet helpful things. Camryn is really doing well, and where she is concerned February is looking up! We are still battling through some insurance issues mainly with Camryn's meds and working through brand name versus generic issues. Slowly but surely it is getting figured out and we are thankful.

Next Tuesday will mark a year since Camryn's official relapse, probably don't need to tell you that it is surreal to almost be at a year. It is hard to realize that in this past year what has transpired...but, we are thankful and I'm sure at some point there is a post worthy of the transformation of a year.

But really what has marked this week is extremely heavy on my heart...I have mentioned before about my aunt who has leukemia. Two weeks ago she had a bone marrow aspiration and got the results this Wednesday. It appears that she has suffered a relapse and at this point has three options for treatment. My parents, my sister and I are going to travel up north this weekend to go visit with my aunt, my uncle and cousins.

It goes without saying that this relapse is hitting far too close to home.

Next Tuesday the word relapse echoed in our hearts and now Camryn is doing well...

This past Wednesday the word relapse echoed in our hearts and now I'm not sure how to deal with the heart-break.

Honestly, I hate the word leukemia...I hate all that it represents, I hate what it steals, what it robs us of. I just hate that in so many ways it just feels so unfair.

My aunt means the world to me...she watched me when I was little while my mom worked before I went to school. I spend many a day enjoying life with her and in so many ways she was more like a "grandma" than an aunt. She has loved me well and I in turn adore her. I really don't know what to expect of this weekend, but I do know on some level it will be about saying a good-bye of sorts. I struggle deeply with good-byes, but this one feels as though it will crush my heart in two. There are so many things I would love to say and so many things I am truly thankful for...guess I just wish these weren't the circumstances that my family finds ourselves.

Yet in all of this I know that the Lord is carrying us through...it's been a rough week. Trying to keep my emotions in check and trying to have hope in the midst of circumstances that just hurt.

Knowing that the Lord has not said the last word...that in His amazing love and care He holds us still. February is a struggle for me...

But oh I cling to the One who holds all our days in His hands...

Trusting.Believing.Hoping

four years...

A long journey...

I remember being a freshman in college and a speaker discussing the four years of college like running the mile in track. Each lap representing a year...I remember thinking then that my college years would be a long journey.

And now we've "run a mile" with leukemia so to speak...four years.

This past year has been a rough one, one that if I'm completely honest it probably has been one of the hardest of the four. When I wrote a post last February I did not know what was coming only 10 days later. And now I do...

When Camryn relapsed it was absolutely heart-breaking how do your travel a journey that you have already traveled once? I'm not sure...but it's been four years since leukemia became part of our vocabulary. And in those four years we have learned much about life, parenting, the resilience of a child, the gift of the moment...and so much more.

And when you turn to the right or when you turn to the left, your ears shall hear a word behind you, saying, "This is the way; walk in it." ~ Isaiah 30:21

This verse has meant so much to me throughout these four years...four years that I would have never chosen for myself or my family. If I could go back and wave a magic wand and erase cancer I would, but I can't. Knowing that as I'm walking that the Lord is walking with us...

I knew it four years ago in a little room at Cedars with a little girl who was so incredibly sick. And I know it today as an almost 6 year old is tuck snug in her bed. Throughout the days that have transpired we have grown and we have struggled...there are moments of pure joy and moments of utter despair. And yet, He is there carrying us through the moments that come.

I will not pretend that these have been easy years...in fact when I think of all that has been lost it is frustrating. But, I know that somehow He is in this story...He is holding us. And even though this last year has been incredibly difficult I can see His hands throughout. I can look back and see when His hands were holding ours and leading us in His ways. Always easy? No. Always happy? No. Always perfect? No. But always His...Yes.

I'm not sure where this next year will take us, I am hopeful that with this coming year Camryn will continue to gain strength and health.

Hopeful for much...hopeful for more sweet memories and days ahead. Trusting in His voice to lead us through...

friday clinic...

Camryn was scheduled to go to clinic on Tuesday, but because of her potential mouth sores her doctors wanted to see her earlier. So off Jason and Camryn went this morning to Friday clinic. We are so very thankful that Camryn's doctors are really on top of things and there really is not a "let's wait and see attitude" about stuff.

Camryn got to see her usual favorites and was very happy about that! As always they take sweet care of our girl and we are so very thankful!

Dr.M concluded that the mouth sores are not GVH related, but rather caused by Camryn biting her cheeks. In classic Camryn fashion as Dr.M was talking he asked Camryn if she bites her cheeks and she said "yes." Love that we have been trying to solve this mystery of mouth sores and Dr.M solves it in no time, guess Camryn really trusts him. :) Anyways, Dr.M has been thrilled with Camryn's progress and decided to discontinue her steroids...yes, you read that right...

Camryn Lee is steroid FREE!

After many months of steroids, the endurance of the not so nice side-effects; she's done. We are so excited! We have already seen the side-effects ease...Camryn has lost thirteen pounds from her highest weight during her steroid months. Believe me we are astonished thinking about where those thirteen pounds were on Camryn's small frame. We are beginning to see more and more of our little girl and to say it is a blessing is a gross understatement. It is quite simply a miracle...

We are completely aware that at any moment the road can change, unknown bumps can come; they already have. But, we are so thankful for where Camryn is today. She's passed another benchmark on this journey...there are many more to go, but for now this is a big one! And you know it's a little piece of good news in February...

Dr.M also said that Camryn does not need to go back to clinic until March...yes, it is an entire month away and at that point they will begin to discuss a cyclosporin wean. Which means that we will begin to see the slow wean of Camryn's anti-rejection medicine which is another big benchmark. Dr.M said that the big surge of GVH Camryn had earlier with the body rash and such was such a good thing...it was a lot without becoming chronic which is almost the best for Camryn. So we are so thankful...

Honestly, we could not ask for more...in light of all the hard memories of February we'll be thankful that for today Camryn has passed a benchmark and she's doing great!

We are thankful for the encouragement of Dr.M...he has walked some very dark days with us, but we are so thankful that he is able to bring us some hopeful days too. Thankful that he continues to pray for our little girl and he believes that the Lord isn't done with Camryn's story yet...

Sunday marks four years of this journey...

Not sure what to think of all that...but for today, we'll be thankful for the end of one of our nemesis and celebrate a bridge crossed!

eight months...

~ To get through the hardest journey we need take only one step at a time, but we must keep on stepping ~ Chinese Proverb

Camryn is still stepping...she is growing, developing and living.

Camryn is fighting...she is doing what she needs to do, even when she doesn't want to.

Camryn is living...she is living a life to the fullest, and sometimes I think she out lives us all.

Eight months post-transplant...

Keep on stepping baby girl, you're getting there. We are so proud of you, words don't suffice. You leave us in awe with your spirit and life. If only the rest of us could learn to live like you do, what full lives we would have. Thank you for teaching us much these past eight months.

Praying for many more...but, for today we'll keep stepping.

the endless list...

Just got home a little bit ago from a dentist appointment for Camryn and Wyatt and let's just say it was not the most fun in our entire lives.

Camryn's been before and every other time been a pro; guess not today. It seems that she has some issues brewing in the mouth/teeth department and pretty much did not want anyone to look, touch, see her mouth and teeth. After many a tear was shed, the dentist was able to shed some light on the subject and now we've got a another issue to add to Camryn's already seemingly endless list of things.

All the while Camryn was struggling Wyatt watched and he was done. This was to be his very first visit and it wasn't the best...let's suffice it to say when he got in the chair he put his hands over his mouth and was not going to let anyone look at anything.

I won't lie it was a horrible visit...not the dentist office fault at all, they were sweet, gentle and kind; but when a little girl has the endless list of things it becomes just another thing she does not want to do. My heart broke for Camryn, she is so tired of all of this. She hates it all...

And you know I really don't know what to say to her little heart...I'm not sure I can make it better and that just kills me. She cried on the way home and is sleeping now, but I know we'll have to battle through another item on the endless list of things we have to *make* Camryn do. I know all parents have to force their children to do things, I understand this...it is one of the joys of parenthood. But honestly the things that Camryn has to do quite simply stink. Medicines all the time...shots every night...flushing her line...blood draws...doctors appointments...and now add to that list of battles teeth and mouth care.

I guess it is foolish thinking that the list will be easy and it won't get any longer, but it does. Camryn is beyond heart broken today...she knows what she needs to do and I know that she'll do it will all the grace she can muster. But I also know that her little heart is just so tired...

And that just breaks mine in two.

My mom also told me today that as my parents and the kids were out on one of their errands earlier this week they drove by gym where Camryn did gymnastics and Camryn just started crying. She said she wishes she could go back, but she can't until she gets her line out and she wished that she could get that line out now.

Sometimes I think the better Camryn does it just is assumed that all is well; and medically speaking it is. But her heart...well I'm not sure how much more that little heart can take.

Because there is already an endless list of things she has lost, missed and just had to delay...and now there is more added to fight through...

Guess we're just waiting for the list to end...

february...

Well dear February you have arrived; as much I would have liked you to just not come this year you came without fail. Oh how I wish I could say with your arrival I am pleased, but quite honestly it is just hard to see numbers, remember moments and find myself reliving various memories along the way.

Hearts are a funny thing that way...they never forget. I can take myself back to Camryn's pediatrician's office that fateful day when we were ordered to rush her to the ER, oh how quickly our world changed...

But, the one positive hopeful memory of February is a little ultrasound tucked away in my heart...

Wyatt Jason Mikels

February marks the first time "Baby" became part of our world and oh what a significant part he is. So for now I will hold on to that happy, beautiful memory and leave the hurtful, painful memories for another day...

Love you Wyatt...thankful that four years ago tomorrow your Daddy and I got to see you for the first time, we thought you a miracle then; but little did we know the extent of that miracle in the making.