**UPDATED AUGUST 24, 2012** - this blog is now several years old, and thankfully Ethan has been fully healed of his JMML leukemia diagnosis. 2008 into 2009 was a rough year, but we survived it, and you would never know, looking at Ethan today, that he was EVER a sick baby. He has been in full remission since his bone marrow/cord blood transplant in 2008 and still going strong. I've left the contents of this blog open for those of you who may encounter the same news that makes your world stand still. If that's you, then find hope, strength and faith within these blog entries. We got about the worst news you can get with a leukemia diagnosis. Less than 20% chance of survival. And only a 50/50 chance with a successful course of treatment. Most of his treatment was "trial and error" and clinical trials.... so trust me, we heard it all. BUT through God's grace, we overcame it all too.

Please find encouragement through my raw emotions, details, and all of the experiences we faced, and know that you're not alone! And to make it easier for you, scroll down and look on the right side of the blog for the "previous posts" section and start from the beginning (April 2008). And if you let me know about your own journey, I promise to pray for you/your family to have the same miracle we have had: kasey_krawiec (at) yahoo (dot) com.

Do not lose hope. It seems like a mountain that is incapable of being climbed. But you can do it. I promise. One step at a time. One day at a time. God's strength truly is enough.

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August 12, 2009

We've Moved!

Well... so to speak. I decided to follow the wonderful suggestions I received, and I've started a new blog for our family. You can now find us at http://www.thekrawiecwindow.blogspot.com/

I love Ethan's blog to pieces!! It will forever hold a special place in my heart. And I intend to leave it up so that our journey... our trial... can continue to encourage others as they encounter similar situations in their lives. The message of God's grace and hope is the story of Ethan's Journey. And that story will forever live on and become a part of Ethan's (and our) testimony. But I've been inspired to start a new chapter in our "story".

Thus, a new blog was born.

As you may know, today is the one year anniversary of Ethan's bone marrow (aka: cord blood transplant). So much was endured at this time last year. For Ethan and for our family. I remember it full well. But so much has been gained as well. What a year! Ethan embodies the word "miracle" more than anything I've ever experienced before in my life. Truly Amazing.

One year ago, he had no hair (thanks to the chemo), was on about a thousand medications that were rough on his little 9 month old body, not to mention the radiation, more chemo, stuck in a hospital bed for months on end... and the list goes on... BUT today... one year later.... He's just had his first official hair cut, he's walking and babbling all of the time (he's louder than any other kid I know, as a matter of fact!), he's 5 MONTHS away from his 2nd birthday, down to only ONE medication, and he's both impatient and adorable as they come! Not to mention the picture of health!

So as you can imagine, we're celebrating today. Amazed at God today. And thanking Him for all of you today! Your prayers and encouragement leave me humbled EVERY single time I reflect on it all. I don't know that I could have maintained the faith I desired to have, without your support along the way. God used you in more ways that you know. Even if we've never met, written to each other, or if I've never directly heard from you. He used you still. Every prayer spoken on our behalf, whether it was once, or one hundred. THANK YOU. I owe you more than I could repay.

I owe Him more than I could repay.... Thankfully, He already knew that.

Use this blog however the Lord leads, if He leads at all. I know many parents get the shock of their lives, immediately and unexpectedly. Too many, in fact. We've been there. And as I'm typing this, I'm praying that God would use Ethan's Journey in ways that would bring comfort to the hurting... just as we were comforted.

Ethan: One year in remission - and counting!

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Because of Christ...
there is beauty for ashes

strength for fear

gladness for mourning

hope for despair

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Psalm 31:24
Be of good courage,

and He shall strengthen your heart,

all you who hope in the LORD.

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Psalm 33: 20-22

Our soul waits for the LORD;

He is our help and our shield.

For our heart shall rejoice in Him,

Because we have trusted in His holy name.

Let Your mercy, O LORD, be upon us,

Just as we hope in You.

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You can now find us here: www.thekrawiecwindow.blogspot.com

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um...forget I said that....

I'm borderline speechless at this point. But I'm never speechless for long, so by the time I finish typing this sentence I'll be back on track! Listen... I'm sorry. So VERY sorry to cause some of you mild heart attacks at when I said I was going to stop the blog.

YOU GUYS & GALS ARE SUCH SWEETIE PIES!

I took Ethan to my hubby's office and several adorable ladies were angry with me for even thinking about stopping Ethan's updates here (just kidding!!!). They were sweet, sweet ladies that were genuinely saddened by the idea.

I had no idea...

Then I had emails. Even a text message! From others who were brokenhearted by the idea.

Seriously. I had no idea. And I'm sorry to make some of you sad! That's not what I want. I honestly thought it was "necessary" for some reason to bring closure to Ethan's journey here online. Maybe you all were tired of reading about us. Maybe there was nothing more to say.

But after all this feedback, I gotta tell you, I've been mildly convicted about all of this. Of course there is more to say! Ethan's ALIVE AND WELL! And how often do we not only get to hear about a happy ending, but actually live through it with someone, as well. And each of you have. You've lived through this with us and it makes complete sense to me that many of you want to continue "seeing" Ethan grow, develop, and live. The unending miracle. And listen to me, I would not want to rob anyone of such hope! Because ultimately, that's the point of Ethan's life. A message of Hope and the power of God. So I don't want to cut that message short by any means!

So if you're on board, I will keep typing, sharing, posting pictures and so forth!

Because there's certainly more to our story. More to Ethan's Journey. More to the miracle that's yet to be untold. And so, there's no need to close the doors on that - especially since there's some sweet souls out there that have followed us this far, and WANT to continue to be a part of Ethan's life... our lives.

I thank you for that. And I think you're AWESOME!

So.... be back soon. The blog will live on. So you can turn that frown upside down, grab some coffee (or if you're like me, some diet dr. pepper) and I'll be back on Wednesday for Ethan's transplant anniversary!

Bear one another’s burdens,

and so fulfill the law of Christ.

Galatians 6:2

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Hear, O LORD, and have mercy on me; LORD, be my helper!”

You have turned for me my mourning into dancing;

You have put off my sackcloth and

clothed me with gladness,

to the end that my glory may sing praise to You

and not be silent. O LORD my God,

I will give thanks to You forever.

Psalm 30:10-12

1 of 2

I've been reflecting the last few weeks - quite a bit actually - about many things going on in our lives. Particularly the "next steps" the Lord is taking our family. For almost a year and a half we've been through a trial that was unimaginable. But through that trial we've seen our lives change through God's grace that would not have otherwise been accomplished. And the touching part to me is how many lives have likewise been touched through this journey. It might sound strange, but my spirit is often quieted by the thought that the Lord may have used what we've gone through with Ethan to help encourage someone else in a similar or possibly even completely different trial in their own lives. And I can easily tear up thinking about you dear families who have taught your children to pray for "baby Ethan". What must it be like for Jesus to see the innocence of a child praying for another child, that they probably will never meet this side of heaven.

I truly can't thank you enough for such a gift.

I started this blog in April of 2008 as a place where I could update family and friends about the ever-changing information we were getting about Ethan's cancer diagnosis. And through this medium, my life has forever been changed by the kindness and generosity of so many. You've encouraged us time and time again. Your prayers, your notes, your gifts... simply put, your thoughtfulness towards us, through Christ, has made a lasting impact on us and I look forward to the day to share it all with Ethan. To tell him the wonders of his life. The sweet baby who touched even strangers in ways that caused them to pray for him every day. The full story of the never-ending miracle.

I look forward to the day he knows the love and grace of the Lord. And the answered prayers He's poured out, continuously, on Ethan's life.

Tomorrow marks the one year anniversary since Ethan was admitted to Boston Children's Hospital for his bone marrow transplant, after months and months of chemo here in Connecticut. And I've been debating/thinking/praying about what the Lord would have me do with this blog. It's been very hard for me to transition out of this mindset of "but what if"... but I feel it's time that I move fully and whole-heartedly into such transition. I've not wanted to let go of Ethan's blog for fear that if his cancer were to return, I'd lose all my lovely followers and their generous prayers over his life. But, as odd as this may sound, I think it's the final step of faith I need to take regarding Ethan's healing. I need to be willing to have no other crutch, other than dependency on God. Standing fully on His promise....

Ethan's transplant actually took place on August 12, and in nine days we will be celebrating the one year anniversary of that blessed day. The day my baby's cancer-ridden blood was replaced by the miraculous life-giving blood of a donor. I believe that will be the last post I make here. It will be an emotional one for me, that's for sure! Much like this one. But it will be a beautiful close and tribute to Ethan's miracle, God's power, and your kindness.

I don't want to erase the site, because I want it to be an on-going encouragement however God sees fit. We get "google" hits all the time for people searching for "prayers for baby boys" or "children with cancer", so I want the message of our miracle to continue to share the Lord's grace. And I'm very excited about what I found on http://www.thecutestblogontheblock.com/. Through that fantastic website, I can turn my blog into a book/journal form so that I can keep it in a tangible way and give it to Ethan to read one day. As well as continue to read and re-read over the years, myself!

I have more to say, but I'll save it for next time. Ironically, Ethan's next doctor's appointment in Boston is tomorrow - the anniversary of his admission date last year - I would love your prayers for yet another good report! It's amazing to us how well Ethan continues to do. He's a beautiful, smart, energetic boy. Our blessing in ever sense of the word.

My cup runneth over, indeed.

...... And the child grew, and the Lord blessed him.

Judges 13:24

PLEASE PRAY!!

To all you sweet friends, family and strangers who have so generously poured out your prayers for our little Ethan and for our family... I ask that you pray - deeply, sincerely and filled with faith - pray for this precious 9 month old baby boy, Stellan, who's heart is very very sick... and has been since he was in his momma's tummy. He has recently taken a turn for the worse and doctors are not sure what "next steps" need to be taken. Some of you may be familiar with Stellan and his mom's blog, but if you aren't (I don't know them/have never met them but found them in the blog world a while back), please take a minute to carry this burden. I've posted the link below. His mom expresses feelings, emotions, frustrations that I can easily remember myself. And it was only by your prayers and God's grace that we endured... So, please...

Pray for this family.

Pray for this mom.

Pray for Stellan!

http://www.mycharmingkids.net/

Jesus loves the little children of the world!

I wanted to give you an update on Alana Feliciano since a sweet reader wanted to know! I thought I'd give you a little update myself, and then copy/paste for you the most recent update her mom had left on their website. First, Alana's small bowel transplant took place a couple of months ago. There were many details involved and it can only be summed up to say, God's hand was in every bit of it. There were many struggles along the way as Hope (Alana's mom) would mention on their site, but God has surely sustained them and continues to do so. Alana was in the New York hospital with Hope for about 2 months. They are now allowed to be back home in Connecticut, however, she is still closely monitored via weekly hospital visits both in Connecticut and New York for any type of rejection and other lab work as she is on 20 different medications that can affect various parts of her little body. I know they would still covet your prayers for her complete healing! Here is the latest update from Alana's mom (yes the adoption went through without any problems and Alana is officially there's!)

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From Hope regarding Alana:
This past Thursday I met with two representatives from PSA HealthCare, which is a pediatric private duty nursing program. The women were very informative about the company and what to expect. I had many questions for them. My questions were all answered to my satisfaction. The company is asking the insurance company for 56 hours per week. I'm not sure if we will get the hours or if we will need them all. As a family we are discussing what times would be best and most beneficial to Alana and the family. I am starting to get excited about getting some help. Her care is tremendous and tiresome. After meeting with the two women on Thursday and getting to see a little how our family functions, they believe they have to perfect nurse for Alana. I hope they are right. I have been praying that the Lord send the right person to our home. Hopefully all the details will be ironed out in the next week. Please pray that all works out well. Alana has been doing pretty well. She still continues to cry a lot. Not sure what the issue is. Hopefully there is nothing wrong with her blood work. Any little decline in her labs can affect her in an adverse way. I do look forward to Mondays because she gets her blood work and I can see if she is doing ok. I get a little apprehensive between Monday and the next Monday. When she was in the hospital she had labs done everyday. So, we also knew right away if something was not right. This is the one thing I have had a struggle with, not knowing how she is doing inside her body and having to wait a week for the answer. Patience and trust has been the lesson for me. God knows what work needs to be done in me.

You can follow Alana's updates at http://www.caringbridge.org/visit/alana_kay

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Today is the second of a few more appointments Ethan will have to have to mark his ONE YEAR ANNIVERSARY since his cord blood transplant last August. I'm still have moments of shock that it's been almost a year since we were admitted into Boston Childrens Hospital for what would be 7 weeks of Ethan's transplant round of treatment. I'm sure I'll reflect more on that in a few weeks once we hit the actual anniversary date, but back to what I was saying.... Every year around Ethan's transplant anniversary, he will have to have several things checked to make sure no long term damage has occurred from the intense radiation treatments and chemotherapy he endured prior to the cord blood transplant. So he's already been to the dentist to check his teeth and bone structure, and all was well. Today he goes to have an echo done on his heart to ensure all is well there, and I'm confident it is! And in the next week or two he'll have an eye exam to check for cataracts or glaucoma (which are possible long term side effects). And he has his routine monthly blood work again on August 4th, up in Boston. We're already in prayer that those platelets are UP in number this time as opposed to last time. But really, all in all, from what we can tell on a day to day basis, ETHAN IS DOING GREAT! He's a 1 1/2 year old that DOESN'T SLOW DOWN! I'm telling you, I can barely keep up with his energy levels throughout the day! Wait, that's a lie. My energy level is no match for his! He's walking, babbling, understanding us, plays hard, eating better, loves to climb, loves music, gets into trouble, throws tantrums when he doesn't get his way, rules the roost, and still has a laugh and smile to melt your heart! So you see, he's your typical toddler!

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Who just so happens to be a cancer-surviving miracle....

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Ethan is precious.

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God is Amazing.

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And we're ever so thankful!

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Jesus loves the little children,

All the children of the world.

Red and yellow, black and white,

They are precious in His sight!

Jesus loves the little children of the world!

We're Back!

Oh my.... what a wonderful vacation we had. We went up to New Hampshire for the week and it was just bliss. We headed out last Saturday morning, which happened to be July 4th. And during our drive Adam and I reflected about how on July 4th of last year, we were being admitted into the hospital for a transfusion Ethan needed. It was a transfusion that lasted almost 8 hours, so we sat and waited with our little man, still not knowing what was going to be in store for us during the cord blood transplant phase of his cancer treatment. Amazing. It's the only word we could come up with.

Amazing that one year after that lonely July 4th in the hospital, we were heading out on our very first family vacation.

Amazing that we are one month away from Ethan's one year mark since his cord blood transplant in Boston.

Amazing that God has protected Ethan in ways we deeply hoped and prayed He would.

Amazing.

This vacation did so much for us. Not only did we enjoy stress-free time together as a family, but it was a much-needed refreshment for our spirits. To watch Ethan play at an amusement park, to take him to see a bear show and watch his excited expressions, to take him up to the top of a giant mountain and watch the wind blow in his face, to be able to treat him like any other healthy kid his age, to have sweet time together with my husband without work or other obligations getting in the way. It was perfect. Absolutely perfect.

And I'm so thankful to our friend who opened up her beautiful condo for us to use while we were there, enabling us to actually take this trip. Such a generous heart. Such a wonderful family! Thank you!

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And thanks be to God for all He's blessed us with. I'm such a moron sometimes. And I can easily sink back into discontentment, fear, or worry IN SPITE of all the blessings and generosity God has given us. You'd think I'd be an expert at leaving my cares with the Lord, but alas I am not. I often fall short. I still trust He's not through with me yet, though, so I have hope that one day I will be such a person. But in the mean time, I need a good splash of cold water in the face and remember just how far we've come.... by the grace of God.

I wanted to also let you know that we had Ethan's baby dedication last night at our church. When our pastor held Ethan in front of the congregation and said, "this is our miracle boy", try as I might I couldn't stop the tears. He prayed a beautiful prayer over Ethan's life and over me and Adam as we strive to raise Ethan God's way.

Amazing.

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*updated* doctor's appointment & randomness

*UPDATE*

Just wanted to post a quick update that Ethan's oncology blood work from his appointment on Monday looks good. His platelets have been dropping in number slightly over the past couple of months, so I'd appreciate your prayers that it's just the normal ebb & flow of his body and not a trend indicating something more serious. The docs aren't too concerned by it at this point, but of course it's all I can think about since they mentioned it. Oh well, faith can't take a break, right?

And thankfully neither does the Lord!

Oh and have I mentioned that we leave for our vacation in just 3 days!?! We're praying for a wonderful trip full of relaxing fun for our little family! I'll catch up with you when we get back.

I'm sure I will have TONS of pictures to share!!

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Original post:

Ethan goes for his routine monthly hospital visit later this morning. Join me in prayer for a perfect set of blood counts today and no unpleasant surprises. We leave for vacation on Saturday and I'm SUPER excited. This is the first real vacation Adam and I've taken in over 2 1/2 years AND our first vacation with Ethan! Did I mention that we are SUPER EXCITED?!

Lots of stuff going on in our lives, but Ethan continues to thrive. He's so funny! His personality is really starting to shine and he's hilarious! Just watching him engaged in various activities or interacting with us and others, he's just a hoot! He's walking now, too! He was expected to be slightly behind on a few milestone activities since he spent so much time in the hospital for his cancer treatments and recovery, but he has completely caught up with where he should be at this age. And speaking of his age, can you believe this kiddo is just a few weeks shy of being 1 1/2?!? ONE AND A HALF! My goodness time flies. And with all that we've had to endure, I'm quite thankful God allowed us to move in and out of the trial of Ethan's illness fairly quickly.

Just a little over a year.

So much can happen in a year.

So much DID happen in a year.

But what an amazing set of days/weeks/months. I still can't fully wrap my mind around everything we've gone through as a family and with Ethan since his diagnosis back in April of 2008. I really can't. I know we couldn't have endured and preserved like we did without God's strength and peace. I tell you for sure, it was not by our might or our strength or our anything... but only by God's grace, God's mercy, and God's power that we were able to even breathe during those hard, hard days. And what an encouragement so many have been to our lives. I was cleaning Ethan's room (sorting out the clothes he can't wear anymore) and I saw all the blankets that were knitted for Ethan, all of the gifts given to him during his hospital stays. All the cards sent to us are all kept in a drawer in Ethan's dresser. It's our "encouragement center". Yep, the bottom drawer in Ethan's dresser is FULL of cards that people mailed to us and cards that children made for Ethan. Yes, I still have (and cherish) all of those things that helped us get through the day to day heaviness.

I look back on this blog, as well. This site started off as a way to keep our extended family and friends in the loop about prayer needs that arose with Ethan's shocking cancer diagnosis. At that point, I was sending out daily mass emails because I wanted as many people praying as possible. And then, with the suggestion of a friend, the blog came to life. One place I could make frequent updates without having to re-send emails all of the time. And I had no idea that it would spread beyond the reaches of those family members and friends that we initially sent the link to. I can't even truly comprehend that complete strangers began following our story and praying for our little boy's miracle. Even now, I start to cry just thinking about it. This blog certainly became a beautiful place for me to come and be real. A place for me to pour out what I had started holding in. A place for me to ponder the Lord. A place for me to connect. With you. And with all that was happening in our lives. And I can't thank you enough for letting me be me, and letting the Lord work through our journey.

I'm not sure where all of this is coming from. I had only intended to write a prayer request for Ethan's appointment today, but then my fingers just kept going. Maybe I'm at a transition point right now. A sort of fork in the road and I'm looking for direction. And maybe I think that if I keep typing long enough an epiphany will occur. Who knows. But suffice it to say, I'm praying for guidance from the Lord on what He'd have me to do next. We've encountered a glorious experience with the healing of Ethan's cancer. A true miracle in the purest form. And I'm trying to determine if the Lord is leading me to share our journey on a bigger scale.

Let me take a step back and clarify I have ZERO desire for fame. Zero. Because then I'd feel pressured to lose 10 pounds and who wants to deal with that burden!?! And I very much appreciate that I can go to Walmart without any makeup on and no one cares (or even points out the fact!).

All joking aside, though, I can't ignore this nagging feeling that there's a message here. A story of faith. A story of hope. A story with a happy ending. And maybe the story has been told sufficiently. Maybe this blog has served the purpose of bringing widespread glory to God (I don't track hits to our site anymore, but you may remember me mentioning in a post last year that we had people from about 9 other countries/providences that followed Ethan's blog! In addition to those who followed our site from the good ole USA. Can I just tell you that that STILL boggles my mind!). And if that's the case then Hallelujah! But I'm trying to be open. I'm praying for direction. What will He make of this journey. What will He make of our experience. What will He make of the transformation He's made in our lives. I don't know. I can't know, unless He shows me. And truth be told, I'm lazy. And I second guess myself. So I'm not moving, unless He moves me.

Completely unexpected and random post today. Guess I just needed to talk. I do appreciating the "listening ear". So thank you. I'm sure another diet dr. pepper is in order for me right about now, so I'll say ta-ta. Thank you for your prayers for Ethan's appointment today.

I love you for praying for him... for us. Always have. Always will. And I love the Lord for His goodness poured out over our lives. Even when other aspects of my life make me weary, His goodness endures. And I'm ever so thankful.

For, lo, the winter is past,

the rain is over and gone;

the flowers appear on the earth;

the time of the singing of birds is come.

Song of Solomon 2:11-12

mr. tuxedo

For those of you who do not know, Adam is the oldest of 5 siblings. And the only boy. So, yes, that means he's got 4 sisters! But they are all great gals, and I love having each one of them in my life! As a result of so many gals in the fam, you know that means WEDDINGS, right? Right! Well, this past weekend, Adam's sister Christina got married and she lovingly had her niece and nephew in the bridal party. Our niece Aubrey was the flower girl, and our sweet boy was the ring bearer! It was the cutest thing in the world, so of course, I just had to post a few pictures for you all to see. There will be more later, but these are the ones I could get my hands on right away....

Mr. Tuxedo himself, Ethan.

The cutest little ring bearer!

Cousins: Ethan & Aubrey

Striking a pose with mommy.

Adam, Ethan, Aunt Christina,

(Ethan's newest uncle) Joel, & myself

In case you can't tell, Ethan's crying in this one....

surrounded by his dad and uncle,

yet wanting his mommy (yay for me!!)

Continually counting our blessings....

singing praises!!!

THERE IS NO DENYING THAT GOD IS WHO I KNOW HE IS.

I just got a call from Ethan's doctor in Boston. Ethan's blood results showed that he is still 100% donor blood!! Did you hear that?? STILL A 100% DONOR BLOOD CELLS!!! At this point, we're 10 months out since his transplant and this is an excellent indicator that the transplant worked, his old cancerous blood is gone, and his new blood is working and growing beautifully! This also means, no further chemo (aka: Accutane) is needed!!

I'd scream if it wouldn't wake up my sweet little miracle - who, incidentally, got his first cold this week and isn't feeling good! But what a miracle in and of itself... he's 17 months old and this is his FIRST cold?! His immune system is having it's chance to really see if it's up to the challenge and I know it is!

Did I mention that I wanted to scream!? Well, I do! I'm about to burst with joy and thankfulness to the Lord for His grace and mercy in answering our faith. Thank you a million times for the prayers you've said on our behalf!

I'm telling you... I've mentioned it time and time again... Be bold. Have faith. A heart without doubt. Not because you deserve for God to do something great in your life, but because He's all-powerful and able to do so. He's the God of all mercy and grace. I've never known that to be more real or true than in this entire experience with Ethan's life. I pray this testimony of our journey has and will continue to encourage you to trust the Lord. I know it's been an encouragement to me. He's been so evident. I'm truly learning so much...

Take Him at His Word.

Pure and simple.

[Lord], Your promises have been thoroughly tested,

and [I] your servant loves them.

Psalm 119:140

unfeigned faith

First, thank you so very much for praying. I truly felt peaceful the few days before Ethan's appointment - and I still do (but more on that in a minute).

Late Sunday night, right as I was getting into bed, I decided I wanted to read Psalm 121 again. I ran downstairs (startling my husband who was watching the NBA finals!) to grab my Bible off the table. I crawled back into bed, and randomly flipped open the pages. It opened to Psalm 91.

"Because you have made the LORD, who is my refuge,

Even the Most High, your dwelling place,

No evil shall befall you,

Nor shall any plague come near your dwelling;

For He shall give His angels charge over you,

To keep you in all your ways.

In their hands they shall bear you up,

Lest you dash your foot against a stone.....

“Because he has set his love upon Me,

therefore I will deliver him;

I will set him on high, because he has known My name.

He shall call upon Me, and I will answer him;

I will be with him in trouble;

I will deliver him and honor him.

With long life I will satisfy him,

And show him My salvation.”

(verses 9-16)

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Not by accident did I read this passage. And it was a beautiful (and unexpected!) comfort to me.

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Then I read Psalm 92:1-5,

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"It is good to give thanks to the LORD,

And to sing praises to Your name, O Most High;

To declare Your lovingkindness in the morning,

And Your faithfulness every night.....

For You, LORD, have made me glad through Your work;

I will triumph in the works of Your hands.

O LORD, how great are Your works!

Your thoughts are very deep."

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When I read those verses, I just knew. I knew that my next post would consist of sharing those verses with you in reference to the answered prayer I knew we'd be receiving at Ethan's hospital visit the following morning.

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And then, simply because God wasn't finished strengthening my faith, I read Jesus' own words to his disciples in Mark 11:22-24,

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So Jesus answered and said to them, “Have faith in God.

For assuredly, I say to you, whoever says to this mountain,

‘Be removed and be cast into the sea,’

and does not doubt in his heart,

but believes that those things he says will be done,

he will have whatever he says.

Therefore I say to you,

whatever things you ask when you pray,

believe that you receive them,

and you will have them".

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It was such a beautiful and personal moment for me. And I wasn't even looking for it. But the Lord spoke straight to my heart in His Word, and I went to bed no longer fearful... not even timid about what I wanted the Lord to do in Ethan's blood counts the next day. His Word is alive. His Word is His communication to our hearts. And I either take Him at His Word, or I choose to let fear/worry/anxiety guide and direct me. And it's honestly just too exhausting to live that way. So, I choose Him. I choose unfeigned faith (2 Timothy 1:5). How much do we miss out on because we have doubt in our heart? He came to give abundant life. It's ours. We just have to believe and trust Him.

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So I went to sleep in just that state of mind.

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A peaceful state of mind.

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Fast forward to the next morning... Ethan's appointment went very well. All of his blood counts were great! They kept saying how wonderful and healthy he looked. He of course hated the blood draw in his arm and screamed and cried to make sure we all knew it. But he crawled right up into my shoulder as soon as it was over and was easily comforted. I found out right away that we'd not know the outcome of Ethan's blood typing for about 10 to 14 days. Typical "Kasey-fashion" would have just melted into a disappointing despair. Because I HATE to wait. But knowing we'd have to wait didn't bother me. I saw it as an opportunity (or challenge!) to stay in a mindset of Faith. And I gladly accept the challenge! I want to use the next 2 weeks to perfect the "do not doubt in your heart", because it's not always easy to maintain. I mean, there's a temptation to fear that the Lord might not come through for us, right? So we back down in our boldness. But again, the Bible says, Let us therefore come boldly unto the throne of grace, that we may obtain mercy, and find grace to help in time of need (Hebrews 4:16).

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So why not take Him at His Word....

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I intend to write to you in about 2 weeks (though you will hear from me again before then!) that Ethan's blood is still showing 100% donor cells and there's no further concern for his needing any preventative treatment. Whew... I just got butterflies in my tummy... because that's a bold statement, right?

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Well, I serve a big God.

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And He's not afraid to prove me right.

if you wouldn't mind...

Could you pray for Ethan's upcoming appointment in Boston on Monday (June 8th)? I know so many of you sweet souls pray for him continually - and I really wish I could tell you how grateful I am to you for that generous gift! And I would greatly appreciate your prayers for this particular appointment as well. You may remember me mentioning that this next appointment would tell us whether or not to start Ethan on a precaution method of "chemo".

Let me back up a minute. I never worry about Ethan's appointments. I really don't. I walk into them expecting to hear back good results. But for some reason, I'm dreading this particular blood test. And I believe the reason is simple. I'm afraid. I'm afraid they won't tell me that his blood is still 100% donor cells. I'm afraid they'll tell me his old blood/marrow has started developing again (his cancer was in his blood, thus the reason for the blood/marrow transplant). I'm afraid of having them tell me he's showing some traces of his old blood type and then having to make a decision about whether it's a fluke that will go away on its own, or to go ahead and start the chemo. I just don't like thinking about any of it. And there's something a bit "final" about this blood test than all of his other ones, and I'm just not ready to face it. I assure you, the old saying "Ignorance is bliss", is quite true for me. Our lives are lived out daily in simple but beautiful ways now, and I desperately desire for that to continue and for cancer (or any talks of it!) to never have a place in Ethan's life again. This test is so significant in some ways, and in some ways I don't want to know the outcome. I'm loving our life right now. I don't want to think about anything else.

But I know that's not how it goes. Ignorance may be bliss, but only for a while. At some point, you've gotta face the music. I know that there's no point in faith if we don't live it out during the potential storms. When the wind starts blowing, we can get scared and think we need to run for cover. But wind doesn't mean a storm is imminent. It's just a distraction inviting us to panic. And my faith is certainly distracted by the wind lately. Pray for my faith to be strengthened. Pray for the temptation to worry or fret be gone away from me. I want to walk into this appointment just like I do all the others. No worries. Complete Faith. Knowing the outcome is going to be great!

Ethan,

The LORD is your keeper;

The LORD is your shade at your right hand.

The sun shall not strike you by day,

Nor the moon by night.

The LORD shall preserve you from all evil;

He shall preserve your soul.

The LORD shall preserve your going out and your coming in

From this time forth, and even forevermore.

Psalm 121:5-8

always

I asked an old friend from high school if I could borrow the lyrics to a song that he wrote because it's been extremely encouraging to me... I hope it is likewise encouraging to you!

ALWAYS

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There’s never always sunshine, never always rain

There’s never always laughter, and never always pain

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Everything has a season

Everything moves in time

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But You are always steadfast

You are always.

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I could not pretend to ever understand

One thing is for sure,

You hold all in Your hand

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There's summer and there's winter,

Autumn and spring

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A time to mourn in sorrow,

A time to dance and sing

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Everthing has a season,

Everything moves in time

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But You are always faithful.

Because You are always.

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I could not pretend to ever understand

But one thing is for sure,

You hold all in Your hand.

lyrics and music by Clayton Brooks

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The Lord will guide you always.... Isaiah 58:11

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please pray!

Please be in prayer for my friend Elaine & her husband. They've been preparing to get their baby girl who was born a few days ago, and the birth mother is going through some emotional trauma with her initial decision. Please pray..... Elaine has had a long journey with infertility and a beautiful adoption process was started. She and her husband have waited and prayed for this child, and have already bonded with the sweet baby girl, as they were in the room while the baby was born. The birth mother was very excited to have her baby go to the Sheldon's because she is unable to properly care for her (for many reasons), but is now questioning all the previously made decisions.

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http://www.twosheldons.blogspot.com/

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Pray likewise for God's comfort to be with all those involved...

pictures first, then the commentary...

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Sitting in church... what a big boy!

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First picnic... and first outdoor swing.... his new favorite thing!
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Fun at the Library.... lots of climbing, falling, and giggling!

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As you have just seen, life has been busy these last couple of weeks, but it's been the woohoo-this-is-a-fun-new-way-to-spend-our-days-cuz-finally-we-get-to-be-out-and-about kind of busy!

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Ethan's had many "firsts" as well. His first trip to McDonald's. Didn't play in the 'play area', but he got to enjoy bits and pieces of a happy meal with mommy. He did get to play at the library, though! They have a baby/toddler play room fully dedicated to children Ethan's age. There was one point that Ethan just laid down for about 30 seconds after playing, then popped right back up and got started again! The few times we've been, we've been the only ones there and I was grateful since Ethan can't quite be around other kids just yet. And you know I was a happy momma when I saw a tub of disinfecting wipes there in the play room. God was thinking of me and little E. And we're looking forward to "toddler time" at the library this July! Can I just say what a blessing it is to me as a mom to be able to do this stuff with Ethan now. We've had to wait so very long to do this type of stuff and it's just wonderful. Absolutely wonderful to be a family enjoying life - together. And finally, Ethan had his first picnic yesterday! Which then led to his first ride in a swing. Let me tell you, he LOVED that swing! And yes, I did wipe that down, too *smile* - still gotta protect that immune system!

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Side note: Did you know clorox disinfecting wipes come in a "to go" pack? You better believe I've got one in my purse, one in the diaper bag and several back ups in the cabinet! I don't go crazy... just cautious. I do expose him to some things that have potential germies hangin' around just to see how that new immune system is working and all I've got to say is "all systems are a go!"

Oh, and he had one more "first", well, "first in a long time". Ethan went to church with me and Adam for the first time in over a year, last Sunday night! That was our first time to be at church all at the same time, as a family since April 2008. Our pastor announced Ethan's presence, and the congregation went into applause for him and for our great God. He can't go into the nursery just yet, but he sat back there in between Adam and myself and did a great job! Playing and eating snacks, and babbling, of course, but a great job!

I praise the Lord, because Ethan's life is a beautiful testimony to His grace & power. And, for that, we have gratitude in our hearts that words will never be able to fully express.

cleansing

It's a bit of a somber day for me. Actually, for many people I know. It's one of those things that you want to rejoice for the person who has gone on to be alive and well in the comforts and beauty of Heaven, but your heart is so heavy (so terribly heavy) for those left behind to walk the rest of their life without that loved one by their side.

I attended a beautiful funeral this morning. I say beautiful, because the presence of the Lord was evident. But it was a funeral. A friend passed away. Her husband gave one of the most touching eulogies I've ever heard. His love for her, his devotion to her, his expression of his adoration for her... and his dependency on the Lord... made such a mark on me today. And I trust it did others, as well.

I left the funeral, very somber. I realize that's not an unusual feeling after such a service. But, I tend to bounce back from things like this rather quickly. I'm not sure why, but I'm pretty good at pushing things aside. My old psychology professor would say that I have very good defense and coping mechanisms, however, I think it's more like I can tend to be a bit jaded at times. Not too much surprises me; not too much shocks me. For very long anyway.

But today, I can't stop crying.

It's seriously been hours now that the funeral ended, and I'm still crying. I've only now realized, as I sat down to the computer, that these tears are those of cleansing. Yes, I'm truly sad for the husband who lost his wife. Heartbroken for him, actually. But these tears run deeper than that.

This has been a season of sadness for so many people that we know. And many that we don't know, I'm sure. And, there's never a guarantee as to how long such a season may last.

I've already mentioned that I can tend to push things aside - or even down deep inside - but you can only hold things in for so long. And today, whatever was lurking in the corners of my soul; my mind, came flooding out. I was apparently in need of a cleansing and didn't really realize it.

As a Christian, I believe in God. I believe in His divine plan for all of us. I believe in His lovingkindness, His mercy, His grace and His power. As a Christian, I also know that He allows things to happen in our lives, not as punishment, but because we live in a world where bad things happen. Sad things happen. Heartbreaking things happen. But because I'm a Christian, I know that He won't allow me to suffer without His intervention. I can rest in knowing that He has things working for my good, even when there's no good to be immediately seen. I am a Christian, because I know Him. I know He loves me. I've seen His handiwork throughout my life. And I can say, without a doubt, that I could not get through these moments of "cleansing tears" without knowing that He's the One restoring the broken pieces. And, if you've followed this blog for any length of time, you'll know that I have had many reasons to let the tears flow... but you'll also know that I've experienced the comfort of the Lord and His inexplainable peace during the most difficult of moments. So, I will cry it out. However, much is hiding in this overwhelmed heart of mine. I will cry it out. Then I will stop. Hand it over to the Lord's care, and trust Him to redeem it all. I know He will. I know He is even now.
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Bless the LORD, O my soul;

And all that is within me, bless His holy name!

Bless the LORD, O my soul,

And forget not all His benefits:

Who forgives all your iniquities,

Who heals all your diseases,

Who redeems your life from destruction,

Who crowns you with lovingkindness and tender mercies...

Psalm 103:1-4

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May I also be so bold as to say something else? Be kind to each other. Our life here on earth is so very short. Be merciful to those around you. Be forgiving of others. Give the benefit of the doubt, before jumping to conclusions. Enjoy the life you've been blessed with... you may think something is lacking, but I bet there's something to be thankful for if you take a closer look. And finally, the most important thing I could say here is, if you want to life beyond the grave, find Jesus. It's not about 'religion'. It's not about what you can "do" to earn your way. It's about the relationship He provides. The redemption He provides. The presence He brings to your life on earth, and the gift He gives your life after your time on earth is over. Again, if you've been reading my blog long, I trust I've built a small level of credibility in your mind. And if that's the case, then trust me when I say, your life will never be the same. Of this I'm sure.

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If it is possible, as much as depends on you,

live peaceably with all men.

Romans 12:18

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And he brought them out and said,

“Sirs, what must I do to be saved?”

So they said, “Believe on the Lord Jesus Christ,

and you will be saved...

Then they spoke the word of the Lord

to him and to all who were in his house.

Acts 16:30-32

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Grace, mercy, and peace,

which come from God the Father and from

Jesus Christ—the Son of the Father—will continue to

be with us who live in truth and love.

2 John 1:3

an update to this morning's post

It's 9:00 on Tuesday evening and I just got a call from Ethan's oncologist here in Connecticut (these doctors put so much time and energy into their patients' lives and I'm so thankful for them and the late nights they put in!). And I was simply relieved to hear that he was just as "unsure" about the need for Ethan to go on Accutane for year, as I was. He mentioned that the decision initially came from Ethan's oncologist in Boston, because it is a protocol they follow with their in-house JMML patients in years prior. Our Connecticut Oncologist questioned the rationale as well, and isn't fully convinced that this is a necessary step since Ethan's showing no signs of relapse. He's going to instead suggest that we have Ethan's blood tested at his next Boston visit (June 8th) to see if he's still showing all donor blood cells (and none of his former cells - they judge this by the blood type). Apparently this is not a routine test that's done. If all signs still point to 100% donor cells in Ethan's body then he doesn't believe further action is needed. If for some reason he's showing some of his old blood type, then the Accutane may be something we want to consider since that can be a sign of relapse. Needless to say, I'm much more comfortable with this approach... and much more at ease now that I know our local oncologist has just as many reservations about this as I do. He said he needed to be completely convinced that Ethan needed the medicine and that a bit more due diligence was in order.

If I haven't said it before, I'll say it now... I couldn't be more thankful for the Connecticut Childrens Medical Center oncology staff and their oncologists. They are so easy to work with. So very caring. And take each patient as seriously as if they were their own child. I'm pleased as punch that Ethan's local doctor and I are on the same page about this.

So now, we just have to make sure that in June, Ethan's blood is showing 100% donor cells! But God's got that under control, right! No matter how many butterflies are in my tummy right now just thinking about what I'd do if they said he's showing two blood types... guess I gotta re-read my below post from earlier today before I go to bed!

faith

I've not yet heard from Ethan's oncologist regarding the rationale behind the protocol calling for JMML patients to receive Accutane for a year... and... I'm not really complaining. I'm enjoying living in denial about having to make a decision about this. So as far as I'm concerned, no new is good news.

The Lord has been busy working in me, though. And I'm more convinced than ever before that Ethan's Journey is a story of Faith. And not in the broad sense of the word (like religious belief or affiliation, as in "what is your faith"), but in the very specific sense of the word. The Biblical sense of the word. Hebrews 11:1 defines faith as, "the substance of things hoped for, the evidence of things not see." To break it down even further, God's Word is telling us that Faith is having confidence of things we hope for, which enables us to be assured of those things that we can't see yet. (You may be familiar with the phrase, "walk by faith, not by sight"?) Believe in God's power to accomplish what you can't see yet. Walk by such faith. Instead of thinking that you must "see it to believe it".

I believe in my heart, like I have all along, that Ethan's story is simply a testimony towards faith. Faith in God. Faith in His Word. Nothing else explains it. Nothing else can take away from it. Early on in Ethan's diagnosis and immediate treatment, through the verse a friend gave me, I decided to challenge God. Not in a disrespectful way, I assure you. But I had long read verses like, "whatever you ask in my name, believing you will receive it", or "if you have faith even the size of a mustard seed, you would be able to tell the mountains to move into the ocean and they would do it" (those are completely my paraphrasing, however you get the idea). And I desperately wanted the rewards of such faith to happen in our lives. So that's how I approached each day. I certainly had moments of giving up. You only have to look back at some of my posts from last year to see that. But I kept clinging to the verses you see on my blog. I kept clinging to faith in God's power. I put "faith" to the task of revealing the truth in God's Word. And I'm unashamed to tell you - that God was faithful each step of the way. I would believe that Ethan would continually to better. Simply because God would make good on His promises of faith in Scripture. When we decide to step out in faith, we have the harder part. Blind faith - faith against the resistance or doubt of others - is not easy to always maintain. Think of Peter stepping out of the boat to walk on water towards Jesus. But I promise you this, God rewards our faith in Him. I believe in my heart that Ethan's healing is the reward of us daring to put trust in God's promises on faith found throughout the Bible.

It should be noted that I'm not suggesting that when miracles do not happen for those of us in this world, that it was not a lack of faith on that person or family's part. I'm simply stating what I believe to be specific to my family's situation. God has reasons for all of our trials. And the message of our individual "stories" are different based on His plan for our individual lives. I can only speak so boldly about the workings the Lord has revealed in my own heart. I would never want to imply His working or reasons for someone else's life. We are all unique. And even though trials may be similar to others, the plan the Lord has in those situations is specific to the factors surrounding the individual and those around them. But I am bold enough to say that He does reveals Himself to us. We don't always know the timing, the "why's", or the reasons. But He does reveal Himself in the midst. And He restores what's been broken or lost.

So basically, that's it. I'm not giving up. I'm daring to continue on. Ethan's been healed. And that's the end of it. His life will flourish. With or without preventative chemo-like medication. His life will beat the statistics of long term side effects that are supposed to hit him later in life.

His life is and will be the unending miracle of God.

One of my favorite quotes is, "Faith is not believing God can do something, it's KNOWING that HE WILL". I even have a plaque saying those words hanging on my kitchen wall. It sounds too easy. It feels like you're living in a sort of denial about the reality of your situation. But in all honesty, it should be that easy. Because God's not asked us to fix the problem. He's not asked us to get caught up in the emotional war. He's only asked us to have faith in Him. And believe His Word. He does the rest.

I have a "blog friend" who has her own story of faith. Completely different from our own journey. And her lessons on faith are specific to her and the Lord's work in her life (which haven't been easy), but man, it's a beautiful story. And it's another story of faith in God's Word, and His reward for daring to believe Him. Get to know Elaine and get to know more about the wonderful God we serve. http://twosheldons.blogspot.com/

happy mother's day

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Before I was a Mom,

I never tripped over toys

or tried to remember words to a lullaby.

I never thought about immunizations.

I didn't worry about who might

be following in my footsteps.

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Before I was a Mom,

I had never been puked on.

Pooped on.

Chewed on.

Peed on.

I had complete control

of my mind and my thoughts.

I slept all night.

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Before I was a Mom,

I never held down a screaming child

so doctors could do tests.

Or give shots.

I never looked into teary eyes

and cried myself.

I never got gloriously happy

over a simple grin.

I never sat up late hours at night

watching a baby sleep.

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Before I was a Mom,

I never held a sleeping baby just because

I didn't want to put him down.

I never felt my heart break into a million pieces

when I couldn't stop the hurt.

I never knew that something so small

could affect my life so much.

I never knew that I could love someone

more than I loved myself.

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Before I was a Mom...

I never knew that I would love being one.

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author unknown

just.... give me a minute

Well, the only way I know how to begin this post is to start from the beginning of yesterday. Everything started out just as it always does. Ethan waking up at 5:45 or 6:00 in the morning, and me dreading getting out of bed. Change a diaper, say hi to daddy while he's shaving and getting ready for work, then head downstairs. Put Ethan in highchair with dried yogurt bites and dried fruit, while I stumble to the fridge to make up a bottle. Habitually walk over to the TV to start a "blue's clues" dvd. Go back to the kitchen, grab a diet dr. pepper (yes, at 6:30 in the morning!), grab bottle, grab Ethan. Head back to the living room with the highly energetic dvd playing in the background and my likewise highly energetic son jumping on me as I still struggle to wake up.

See... just like every other morning, yesterday was no different. Insert the minor fact that we had a hospital visit later in the morning, but still, we're used to those. No big deal (well, aside from the screaming that ensues when mommy and 2 nurses hold little E down during the attempt to draw blood!).

Looking back, I guess I should have seen this coming. A weak link in my faith. Do you know the whole saying, you're only as strong as your weakest link? Well, I'm ashamed to admit that I am acutely aware of the truth in those words.

I'm not sure how this whole scene will come across to you, but to me, it completely shook me up.

Ethan sees a Nurse Practitioner when he has his routine visits in both Boston & Connecticut. There's really no need for him to be seen by his Oncologists there since he's been doing so well, and each of his Nurse Practitioners are excellent and I have a great relationship with both of them. Well, his NP in Connecticut stepped into our room to begin his exam. And after our usual chat about how Ethan has been doing, she asked me if I had signed a waiver for Ethan's next phase of treatment. I stared at her with a blank look on my face. She asked if either of the doctors there in Connecticut or Boston had mentioned to me about the protocol calling for Ethan to start back up on his at-home chemo treatment (Which is actually, Accutane. A medication adults take for acne, but works very well as a form of chemo for certain kinds of leukemia. Ethan was on Accutane last year before his transplant). The protocol we've been following for Ethan's JMML apparently also calls for a daily dose of Accutane for a year as a precaution. Needless to say, this was the first I'd heard of this piece of the protocol. The NP thought I'd already been briefed and felt horrible to spring this on me. And unfortunately, she didn't have the background information on the reasoning for this step to properly answer my questions.

All of a sudden I start crying.

She then feels even more horrible.

It's not her fault.

It just took me back to a place I never wanted to go. "Chemo". Cancer. Ethan. It was all just hitting me all over again & I lost it.

I needed a minute.

I asked the most obvious question that was in my mind. "Is he showing signs of a relapse?" I could barely get the words out. She immediately assured me that NO, he was not! His blood counts continue to be fantastic. So then my next most obvious question was why would they use a chemo-like treatment if he's healthy? She said it was just a precaution that the protocol calls for and that previous JMML patients went on Accutane, every day for a year, and had long term remission success. My third most obvious question was, "how do you know that they wouldn't have had long term remission success without the Accutane?" She didn't know. But it wasn't her fault, either. She walked into a situation in which she was told the doctors had already discussed this with me, so at this point she was just doing the best she could on limited information. Ultimately, the doctors believe this is a necessary step, otherwise they wouldn't have suggested it. And the protocol calls for it. But at this point, I am not at all comfortable with this. I don't understand giving a healthy baby a highly toxic medication every day for a year just as a precaution.

I need to better understand this.

I'm currently waiting for the doctor to call me and explain the rationale. But I must be honest, I'm not at all looking forward to this conversation. It reminds me of the lengthy conversations we had about whether or not to remove Ethan's spleen. The protocol suggested it, but the surgery was very risky. I didn't have a peace about going through with it and in the end (after much thought, consideration and discussion) the doctors and surgeons agreed that the surgery posed more risk to Ethan's health then leaving in the spleen with the potential risk that the radiation treatments wouldn't eliminate all of the cancer hiding in there. Thankfully, today Ethan is cancer-free AND has a healthy spleen fully intact.

So here we go again. Another heavy item on the table. Another thing to weigh and consider. And I'm just not happy about it. I've been upset ever since our appointment yesterday. And why? Nothing has changed. Ethan's still in as good of condition and health as he was yesterday morning, and the day before, and the day before that. His blood counts from yesterday's visit were fantastic. So what has changed?

My weak link.

Like I mentioned earlier, I shouldn't be surprised. I should have seen this coming. An attempt to attack my faith. An attempt to shatter it. A foothold in the door was all that was missing. And yesterday doubt and fear quickly found their way in.

I'm struggling to fight against it. The miracle is mine. He who promised is faithful. I'm determined. But today, I'm weak. I remember too much. Things I had mentally moved past, thinking that phase in this trial was behind us. I just can't bring myself to accept putting Ethan back on a form of chemotherapy used during his initial cancer treatments, when he doesn't have cancer. I just don't understand the need. I don't want to accept that someone somewhere believes that his remission might be short-lived. I refuse to accept it.

I just keep crying at random points throughout the day. Just shaking my head no.

The cancer is gone. It's not coming back.
The cancer is gone. It's not coming back.
The cancer is gone. It's not coming back.
The cancer is gone. It's not coming back.

Right?!?!

Please God! Point me in the direction of truth. The treatment is optional, but I know they will try to convince me it's necessary. But I'm not moving unless I feel Your peace. But help me take the emotion out of it. If it's necessary according to You, that Ethan be put on chemo for a year, along with all the horrible side effects, then I trust You to give me the strength to "okay" that. But if this is simply the wisdom of man's best guess and NOT in Your plan for Ethan's body & recovery then give me the strength to follow through on that and allow once again for the doctors' opinion to be swayed. Restore my faith. Strengthen my resolve. Give me peace. And assurance of everything I've long believed about Ethan's journey.

Please pray that Adam and I have wisdom as we hear from the doctor over the next few days and likewise then have to make a decision.

1 Cor. 2:5 - ... your faith should not stand in the wisdom of men, but in the power of God.

Repeat as often as necessary.