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.