Sunday, February 28, 2010

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.

Thursday, February 25, 2010

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.

Wednesday, February 24, 2010

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!

Sunday, February 21, 2010

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!

Saturday, February 20, 2010

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.

Thursday, February 18, 2010

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."

Wednesday, February 17, 2010

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.