Ethan's Journey: Living Proof of God's Unending Miracle

We've Moved!

2009-08-12T06:00:00.006-04:00

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.

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.

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

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

2009-08-08T06:56:00.008-04:00

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

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

2009-08-03T07:42:00.004-04:00

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!!

2009-07-27T09:18:00.005-04:00

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!

2009-07-20T08:35:00.007-04:00

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!)

_____________________

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!

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

Ethan is precious.

God is Amazing.

And we're ever so thankful!

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!

2009-07-13T09:14:00.010-04:00

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!

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.

updated doctor's appointment & randomness

2009-06-29T08:41:00.010-04:00

*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

2009-06-23T09:38:00.007-04:00

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!!!

2009-06-15T13:39:00.005-04:00

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

2009-06-09T08:43:00.006-04:00

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)

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

Then I read Psalm 92:1-5,

"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."

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.

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

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".

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.

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

A peaceful state of mind.

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).

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

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?

Well, I serve a big God.

And He's not afraid to prove me right.

if you wouldn't mind...

2009-06-04T08:24:00.004-04:00

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

2009-06-02T11:58:00.005-04:00

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

There’s never always sunshine, never always rain

There’s never always laughter, and never always pain

Everything has a season

Everything moves in time

But You are always steadfast

You are always.

I could not pretend to ever understand

One thing is for sure,

You hold all in Your hand

There's summer and there's winter,

Autumn and spring

A time to mourn in sorrow,

A time to dance and sing

Everthing has a season,

Everything moves in time

But You are always faithful.

Because You are always.

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

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

please pray!

2009-05-29T09:52:00.005-04:00

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.

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

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

pictures first, then the commentary...

2009-05-26T13:53:00.010-04:00

Sitting in church... what a big boy!

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

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!

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!

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

2009-05-20T15:12:00.012-04:00

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.
-

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

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.

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

live peaceably with all men.

Romans 12:18

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

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

2009-05-12T21:08:00.006-04:00

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

2009-05-12T09:13:00.003-04:00

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

2009-05-10T07:00:00.002-04:00

-
-

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.

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.

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.

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.

Before I was a Mom...

I never knew that I would love being one.

author unknown

just.... give me a minute

2009-05-07T10:02:00.009-04:00

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.

doctor appointment today

2009-05-06T09:17:00.003-04:00

It's time for Ethan's monthly check up. In a couple of hours we will head to the Connecticut Children's Hospital for some blood work. I'm not looking forward to the whole experience, and I'm sure it's safe to say Ethan isn't either, however he's blissfully unaware at this point in our morning routine! Pray with me that they will be able to draw the blood from his arm, or finger, successfully the first time and that Ethan experiences as little trauma as possible. Please pray also for some insight/suggestions on how we can treat the severe dry skin Ethan has throughout his scalp. He scratches so much, he makes his scalp bleed. And right now, the creams they've suggested haven't helped.

All in all, though, I expect good results from his visit today & I'll update with details tomorrow!

I'm also very curious to see if he's gained any weight. We've been trying to make strides in his eating habits, so we'll see today if any of it has paid off over this past month!

Enjoy your day... and thank you for praying!

a borrowed thought & an ethan update

2009-05-04T08:46:00.005-04:00

I wanted to share with you the thoughts I borrowed from my former boss from my college days. I asked him if I could share with you, what I thought, was one of the most simplistic yet profound explanations of God's Will for our lives versus our own. He (Eric) said I could borrow his "thoughts" as long as I mentioned what a wonderful boss he was "back in the day"... and well, he was. So thanks, Eric, for sharing your heart and letting me pass it on...

________________________

My Worst Fear

I may have mentioned it to you before, but my worst fear is a movie.

I get to heaven and God sits me on a couch. He gives me a Coke and some popcorn and says "Watch this". The movie I watch lasts for four hours, but it seems like it only lasts 15 minutes.

There's action/adventure/romance/comedy/ethical dilemmas all wrapped up into the best movie I've ever seen. The leading man is making all the right decisions and and all the right choices. Its the best of each movie I've ever seen in my life all wrapped up in one movie.

When the movie is over, I ask God "What was that all about? Who was that actor? Who's story was that?" He turns to me and says "That was your life. The life that I wanted you to lead. I wanted you to be all of that and do all of that...but you chose something else. Where you didn't recognize your life in this movie is where you chose your own way. I wanted the best for you, but you chose otherwise."

My fear is that I won't recognize any of that movie. I fear that I will have chosen all along the way and never realized the plan that God had for me. Its not only my fear for me, but its my fear for my family and friends. I don't want them to miss out on God's plan for their life. I want them to be able to lead the life that God has for them with reckless abandon.

Be thankful that your "movie" is not done. Pray every day that God will open your eyes so that you'll know where His Will is for you and that you'll humbly obey.

When he calls to you move, then move. And when he says "stay", don't move an inch.

___________________________

As for an Ethan update, I must tell you things have been going great! We've been to all kinds of places - even restaurants - and he always does such a fantastic job in whatever the environment. I believe he enjoys all of the "exploring"! We're still very careful about him being in large groups of people, or in close contact with people outside of family, but it's such a whole new world for us as a family.

He's showing no signs of illness or sickness, which indicates his immune system must be working well. However, he'd been a little out of it lately because his 4 molars are coming in all at the same time, and of course, feeling yucky during those moments are to be expected.

I will say, though, that having been in the "cancer world" for so long with him, I'm a bit uneasy when he shows signs of not being quite himself. Reason being, I'm completely unfamiliar with "normal" baby highs & lows. So when he started acting lethargic and had a dip in his otherwise lively personality the other day, I did struggle with remembering that that was how he was acting the day we got his leukemia diagnosis. Fear and worry were hot on my heels all morning, but the Lord's love was even more so. Scripture verses flooded my memory & I kept asking the Lord to point me towards the truth. And sure enough, I felt around that little mouth of his and I felt 4 molars (2 on each side) coming through.

Relief came, followed by my tears from just mentally reliving the whole experience of his diagnosis last year... and then came thanksgiving. Because, yet again the Lord came to my rescue - in a very personal way... He knew what mental road I was quickly traveling down, understood why I would go that direction, but sweetly reminded me that this was simply a "normal baby phase". I'm in the normal baby phase of our lives. It's amazing to think about.... and it's a good place to be.

A great place to be.

But still takes some getting used to... *wink*.

reflecting

2009-04-30T07:58:00.007-04:00

Since it's been just over a year now that I started this blog, I thought I'd take a look back on this day last year to see what we were going through. You can read it for yourself here.

I know it's no coincidence that on this very day, last year, I was explaining all the places Ethan couldn't go due to his weak immune system. I'm sure you can imagine the tears that welled up as I remembered where we were at that time in Ethan's treatment - and where we are now in his recovery... in just one years time. Simply amazing. What a drastic change we've encountered. I take him out places with me all the time now. And last year around this time, we were still looking for a bone marrow match, still giving him chemo treatments at home (as well as hospital stays every other week for other treatments).

April of 2008 Ethan was 3 months old, newly diagnosed with leukemia and it was just the very beginning of all we were to about to endure with Ethan's cancer, but how amazing... seriously amazing, that in April of 2009 our little boy is a thriving (thriving!) 15 month old boy. Sometimes I can't even fully wrap my mind around the goodness of the Lord.... today being one of those times. I'm once again overwhelmed at His power and mercy.

I've never been one to question God's ability to do something - anything! But I've sometimes been one to question whether or not He'd do it (whatever "it" might be) for me. But it's undeniable how wrong I was in that line of foolish thinking.

It's not about us. It's not about things we think we do or don't deserve. Because frankly, we don't deserve anything from Him. It's about Him. It's about His desire to demonstrate His love for us, His mercy towards us, and His grace within us. And receive glory along the way.

Cling to Him! It's all I can say. Cling to Him.

The setbacks. The disappointment. I understand those things. We've lived those things. But I also understand (even better than I ever have), the bigger picture.

It's all working for our good. Trust me.

No, better yet, Trust Him.

good times

2009-04-22T15:53:00.012-04:00

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You're a little piece of heaven

You're a golden ray of light.

And I wish I could protect you

From the worries of this life.

But if there's one thing I could tell you,

It's no matter what you do

Hold onto Jesus,

He's holding onto you.

The world will try to tell you

That might is more than right.

And beauty's on the outside

And being good's a losing fight.

But remember what I've told you

'Cause the world will make you choose,

Hold to Jesus,

He's holding onto you.

Hold on to Jesus, and cling to His love

Rest deep in His mercy,

Whenever things get rough

And don't lose sight of His goodness

And don't ever doubt this truth,

That when you hold onto Jesus

He's holding onto you.

Hear me, dear Jesus,

Rock this little one to sleep.

Keep him close when he's scared,

And give him grace when he is weak.

I know he'll stumble, but I know he'll make it through,

If you hold to him, just like you said you do.

Hold him Jesus,

And he'll hold on tight to you.

by erin o'donnell

since it's nap time...

2009-04-22T15:25:00.009-04:00

I thought I'd update the blog with a few thoughts.

First, thank you for your prayers for Alana Feliciano. So far, she remains in stable condition and we continue to pray against infections and against her body rejecting the new organ.

Second, I have an address for Hope and Alana while they are in the hospital over the next 6 to 8 weeks. If you'd like to send them a card or care-package (I hear there's a Dunkin Donuts on the premises, which is a favorite of Hope's), it's important to use the address exactly has I have it below. Alana's birth name (Kevelin) is still in the process of being legally changed, so don't be confused.

Mount Sinai Hospital
Kravitz Childrens Center

Patient: Kevelin Taysaco-Rosales, 6th Floor

1184 5th Avenue

New York, NY 10029

They have also set up a website of their own to mark Alana's progress and prayer needs as they arise. Please check out their webpage. http://www.caringbridge.org/visit/alana_kay

And finally, I thought I'd let you know how well Ethan has been doing on our little outings! You'd have to watch him in order to fully appreciate what I'm gonna say, but he's simply amazed when we go out.... just taking it all in. His bubbly personality gives way to caution & awareness, and his eyes barely blink! He's just soaking it all in - and gets pretty exhausted by it all - but it's so exciting to him too! We've been to Starbucks, the Yankee Candle Village, BabiesRus, the mall, and today we went to a restaurant for the first time (the Rainforest Cafe inside the mall). He was such a good boy! Sat in his highchair - for the first time out at a restaurant - and just couldn't get enough of all that was going on around him. Now, we sat in a table quite a ways away from other people, still keeping some precaution, but he was so intrigued! If only I could get him to eat... oh well... that's an on-going struggle that I'm tempted to have an anxiety attack over, but I'll give it to the Lord again. But anyway, I digress... For me personally, I can't get enough of this new change in our lives. I'm sure this will sound ridiculous, but I actually "feel" like a mom when I get to take him out places with me, and put him in cute outfits and hats... it's so much fun! He's not used to it yet (and I have my awkward moments, too!), but it's just so good for both he and I to take in the world around us. And, health-wise, he's done great! No fevers, no colds... no signs of illness. Praise God for that immune system doing it's good work!

I'm so thankful to the Lord for His distinct role in my life. I've been thinking about that more and more lately. Every day, He's there. Waiting for me, protecting me, answering prayers, putting me in line with His will for my life. Opening doors for my good. Closing doors for my good. Protecting my family. Giving us reason to have joy. Giving us reason to trust Him. I've tried to just stop and focus on all of that lately. It's really overwhelming to think about and absorb. He's truly in all of the details. If I step out of the way, hand over the reigns, He not only takes care of things, but He arranges things in such a way that it's better - profoundly better - than if I had foolishly dared to do it on my own. He loves me. Loves me more than I can even comprehend. And He's gracious to me. Gracious and sweet in ways I could never earn or deserve. And He loves the people in my life, even more than I do and treats them with the same grace and mercy.

It's truly amazing. I'm a skeptic by nature, and it's hard to convince me of things sometimes, but of this I'm fully convinced - I do not want to live one single minute without Him in every facet of my life.

I will repay you for the years the locusts have eaten...

And you will praise the name of the Lord your God,

Who has worked wonders for you.

Joel 2:25-26

alana update

2009-04-20T09:54:00.005-04:00

I had a message from Hope this morning at 8:00. Alana's surgery lasted just over 10 hours - into the wee hours of this morning. She said that the donor organ was in excellent shape and that she was thankful that God provided such a good match for her little girl. The surgery went well, and Alana is starting to slowly come out of sedation, but is doing well herself. Alana's liver is severely damaged, so they thought they'd have to remove part of the liver, but decided instead to remove her gallbladder with the expectation that without the gallbladder her liver would return to a healthy state. Hope sounded extremely exhausted. I doubt she has slept much at all in the last 29 hours. The next several days/weeks are extremely critical for Alana. Hope has asked for prayer that Alana's body would not get an infection and that her body would not reject the organ. God protected Ethan from any infection during his bone marrow transplant, and I know His power and mercy can do the same for Alana. Please pray in that way!

For the LORD is good;

His mercy is everlasting,

And His truth endures to all generations.

Psalm 100:5

prayer request - alana feliciano

2009-04-19T07:59:00.004-04:00

----------- update ----------

The organ arrived later than planned at Mt. Sinai in NYC, so Alana's surgery was delayed until 2:30 this afternoon. She's currently in surgery now, and the procedure is a 10 to 14 hour surgery. Please be in prayer for the doctors as they work and for Alana's body to cooperate.

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A few weeks ago, I posted this prayer request for the Feliciano family.

You may remember, they were on their way from Connecticut to NYC for their newly adopted daughter's bowel transplant. However, 1/2 way there, they got a call from the hospital that the organ had died and the family had to turn around and go back home. Well, this morning at 1:00, her family got the call that another organ was ready for her. Alana was in the hospital here in Connecticut, so she and her mom, Hope, were taken by ambulance to NYC and are there now. Alana (about 2 years old) is scheduled to have bowel transplant surgery today at 11:30. I spoke to Hope this morning and I understood the fearful hope she had in her voice. She will be in NYC with her daughter for 6 to 8 weeks, just as I was with Ethan in Boston. I know this will not always be an easy time for her... but even harder as she has three kids at home that she will not be able to care for or be part of their daily lives. We desperately want to trust the Lord in situations like this, but sometimes fear and worry get the best of us. Please pray the Lord's peace and strength over Hope and her husband today. Pray for wisdom and precision for the surgeons. Pray for Alana's body to accept the new organ. And pray for her overall healing.

As soon as I have an address for them at the hospital in New York, I will post it here. I know from experience how sweet it is to receive encouragement from friends and strangers that are lifting us up to the Lord. You folks are some of the sweetest in the world, and I know she'd likewise benefit from your kindness.

I'll keep you posted...

got this excerpt from a friend via email

2009-04-15T16:40:00.002-04:00

"He did not waver at the promise of God through unbelief, but was strengthened in faith, giving glory to God, 21 and being fully convinced that what He had promised He was also able to perform." - Romans 4:20-21

One of the hardest things for us to do is wait on God. Sometimes God’s promises don’t materialize as soon as we would like, and we wonder if God has forgotten us. What God has promised He is able to perform. Think of the many wonderful promises He has made. How do we know He is able to do what He has promised? Because He is the Almighty God. As we wait for the fruition of God’s promises, we can find confidence in knowing God is not only in charge of the event, but He is in charge of the timing. What energizes us as we wait for Him is this thought: God has never promised anything to any of us that He is not able to do; and He is faithful to do what He promised.

God will not prostitute His power to give us desires that will in the end be destructive to our walk with Him. But if we are consumed with a passion to find God’s will through His Word and His Holy Spirit, we can always be in the place where God can shower down His power upon us.

easter

2009-04-13T09:55:00.010-04:00

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God sent His son, they called Him Jesus

He came to love, heal, and forgive.

He lived and died to buy my pardon,

An empty grave is there to prove my Savior lives.

Because He lives, I can face tomorrow.

Because He lives, All fear is gone.

Because I know He holds the future,

And life is worth the living just because He lives.

How sweet to hold a newborn baby,

And feel the pride and joy he gives.

But greater still the calm assurance,

This child can face uncertain days because He lives.

Because He lives, I can face tomorrow.

Because He lives, All fear is gone.

Because I know He holds the future,

And life is worth the living just because He lives.
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From our family to yours - We hope you all had a wonderful Easter and that you come to know Jesus in ways you never have before.

a day of rejoicing

2009-04-08T08:41:00.006-04:00

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This is the day the LORD has made;

we will rejoice and be glad in it.

Psalm 118:24

There had been many thoughts tossing and turning in my head as we have been getting closer towards today - the one year anniversary of Ethan's leukemia diagnosis. And a part of me was tempted to re-live the fear of that day (and the days that followed).... like a blanket of "you-never-know-what-could-happen-tomorrow" wanted to settle on in and cozy on up to me, surrounding me in a comfortable state of worry. But truth be told, I wasn't comfortable in that line of thinking. And thankfully, God's grace didn't let me stay there too long.

Yes, today is the one year mark of when we were shocked by Ethan's leukemia diagnosis. I mean, he was only an 11 week old baby and our first child. Of course we were shocked. But the story doesn't end there. If it did, maybe today would carry a different tone for me. Maybe I wouldn't want to think about all the details. But, this is the day the Lord has made... and I want to rejoice and be glad!

This anniversary isn't simply a marker for when Ethan's treatment plan began... it's a testimony and a reminder of the year we've had. The year in which God was fully evident, every single day. And actually, that's the point of my rejoicing today. He was truly evident, every... single... day. Of all the "stuff" I remember, that's what I remember most. The Lord was there. Immediately, instantly and never left. He held us up in those first few hours. He kept us strong those first few weeks. And above all else, He protected Ethan. Every dangerous/painful side effect we were told to expect Ethan to experience, never happened. We were told that Ethan's cancer was so rare that it might not respond to the standard treatment protocols. But today, we know he's cancer-free. God was in every detail. We got cards, emails, & gifts from people on the days that were our weakest... coincidence? No. God was in every detail. I can't remember if I've told this story here before or not, but there was one morning in Boston during Ethan's transplant that I was really down, extremely tired of being in our situation and in need of spiritual refreshment. And I remember I simply wanted a blueberry muffin. Like a blueberry muffin would somehow make my day better. It was very late in the morning and I knew the tray of snacks that they brought in for parents would have already been gone.... but, I decided to go try and find something anyway. I walked down to the kitchen that we parents shared on the transplant floor, and there was a blueberry muffin. The only thing left on that tray. I knew it was for me. And I knew it was from Him. God was in every detail. The big ones and the small ones. And I have a thousand stories that prove His mercy, His grace, His tenderness, and His love.

And that's what this day is about to me. The day that reminds me of the year we've had. The year that God blessed our family in such wonderful ways.

Ethan's Journey.

Our Journey.

God continually revealing Himself.

Yes, this is the day that the Lord has made. We will rejoice and be glad in it! And, as a side note, tomorrow is mine and Adam's 4 year wedding anniversary. An anniversary to rejoice in today, and another anniversary to rejoice in tomorrow. God is good. I assure you, God is good!

Thank you, Lord Jesus. We give You all the glory for Ethan's healing. We give You all the praise for how well he has done. I pray that this journey has disclosed Your will in the ways You desired. I pray that Ethan's life will be a long & healthy one and that the testimony of Your miracle in his life will live on year after year. I pray that we are permanently changed by all the wonders You've done in our lives. May we never forget. Thank you, Lord... thank you for what You've done through Ethan's life in this past year. Thank you also for Adam. You've blessed my life in more ways than I ever could deserve. Amen.

wonderful news!

2009-04-07T07:29:00.002-04:00

Yesterday's appointment went VERY well. Thank you so much for praying. They actually drew blood from Ethan's finger this time, and though he sincerely hated every minute of it, the screaming and fighting was less than when they draw the blood from his arm, so for that I was thankful! His results came back perfect, and we're at the point in Ethan's recovery that we can start to slowly bring him out of his isolation restrictions!

It starts out that for the month of April we start "introducing" him to certain places... grandparents house, the mall when it's not crowded... basically out of large groups of people & still away from direct contact with people that are sick.

Then in May, we can take him out more frequently and around more groups of people (such as restaurants, other peoples homes, have people over at our home etc).

Then in June, increase the frequency and the number of people he has direct contact with... and the idea is that by the end of June he'll be fully restriction-free! We just need to pray that he doesn't get sick (fever/infection) from these exposure exercises and then we're good!

Such a hopeful outlook... I'm beyond relived... beyond thankful.... beyond blessed for how well protected God has kept our little boy!

headed to boston today

2009-04-06T06:30:00.002-04:00

Please pray for Ethan's appointment today. We leave in just a minute to head out to see his doctor in Boston for his routine check up. Pray for his blood work to be easily drawn, for his panic to subside quickly & that his blood counts will be great! During this appointment we will also find out the protocol/procedure for Ethan's transition out of isolation. I'm very curious to know the game plan! And I have a lot of questions regarding various topics that I'm hoping can be resolved today as well. Please also pray for mine and Ethan's safety as we drive... it's supposed to be raining all day. And selfishly, I really don't want the 2 hour drive (each way) delayed by weather or traffic. Thanks so much! I'll let you know tomorrow how everything turned out!

I can't express enough how much your prayers for us during each of his doctor's visits always mean to me.

perfect peace

2009-04-02T08:41:00.004-04:00

We're often asked how it's possible we've been able to survive (emotionally, physically, spiritually) this season of our lives with Ethan's cancer diagnosis, treatment and so forth. The ways in which we attempt to describe it may vary from time to time, but the message - the bottom line - is always the same. God's grace got us through. His peace covered us in the times we couldn't understand. He walked us through it. Every step of the way. Yes, we had our moments of crumbling and not seeing much beside our own tears, but even then, God gave us comfort. I mention this, because last Sunday morning, our church choir sang the below song and it reminded me immediately of Ethan's Journey this past year (April 8th will be one year since his diagnosis). And I truly felt the words, because we saw them come to life in our own lives. We saw God Himself come to life in ways we'd never known before. I've never known peace like I knew it to be true during even the worst days for Ethan. His perfect peace.

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When life's burdens get so heavy

and it seems I'm all alone,

I cast my care on Jesus

and come boldly to His throne.

I find His grace sufficient

when His promises I heed.

For His very life He sacrificed

and He lives to intercede.

He is Lord of lords and when He speaks,

winds and waves obey.

When Jesus whispers "Peace be still,"

then darkness turns to day;

and as I'm trusting in my Savior's Word,

doubts and fears all cease.

And beneath the shelter of His wings

I'm at rest in perfect peace.

I will seek for souls in darkness,

Calvary's love with them to share.

Empowered by His Spirit

I will follow anywhere.

For I know whatever befall me

my Lord is in control;

and as my mind is stayed on Him

perfect peace He gives my soul.

He is the Lord of lords and when He speaks,

winds and waves obey.

When Jesus whispers "Peace be still,"

then darkness turns to day;

and as I'm trusting in my Savior's Word,

doubts and fears all cease.

And beneath the shelter of His wings

I'm at rest in perfect peace.

(by Zichterman & Lynch)

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I pray today, in whatever situation you face, that you find shelter beneath His love and are able to rest in His perfect peace.

You [God] will keep him in perfect peace,

whose mind is stayed on You,

because he trusts in You.

Isaiah 26:3

update urgent prayer & praise!

2009-03-31T18:14:00.010-04:00

----------------- UPDATE -------------------

Within minutes of me shutting down the computer after leaving the below post, Hope called me to let me know that the NYC hospital had called her (she and her husband were half way there) that the organ they were going to use for their daughter's transplant tonight had started to die. With that, it was determined that the organ would not be able to survive a transplant. So, they are now turning around and heading back to Connecticut. No donor match. No surgery. I can only imagine the disappointment they're struggling with at this moment. Pray God's mercy on them. Pray for a donor for Alana. Pray her health stay strong until one is found.

------------------- ORIGINAL POST -----------------------

A few times I've mentioned to you that the Feliciano family was in need of our prayers. They were in the process of adopting a very sick little girl (named Kevy, but her name was recently legally changed to Alana once the adoption process was finalized) who was in need of a bowel transplant. They've been waiting for a donor for quite a while and this afternoon Hope (the mother) got the call from the New York hospital that a small bowel/intestine was in their possession and that she and her daughter needed to head to NYC as soon as possible. This has been a long answer to prayer, however, prayer is still very much needed for this family.

Alana (not quite 2 years old) will be going through a major surgery tonight. A successful surgery is her only chance of survival and it's quite an invasive one. Hope will be staying in NYC (away from her husband and 3 kids at home here in Connecticut) for about 6 to 8 weeks. Having been through that same situation during Ethan's cord blood transplant in Boston, I know that she will need your prayers and encouragement, as it is difficult to live in a small hospital room with your sick child while also being away from your loved ones for such a long time. I will find out her address at the hospital and will post it here as soon as I know. So many of you reached out to us during such a difficult time and I know Hope would likewise benefit from your thoughtfulness. I'll keep you posted....

But mostly, please simply pray for this family. Pray for the 3 kids at home (2 under the age of 6 and one in highschool) who will miss their mother terribly. Pray for Cesar (the husband) who will have to take care of the home and the kids, while missing his wife and being a part of Alana's recovery. Pray for Hope as she endures a scary and lonely roller coaster ride over the next 2 months. And, pray for Alana.... pray her body accepts the new organ, that her recovery is without complication, pray her body remains free of infection, and pray that this procedure cures whatever it is that is attacking her little body. Pray God's hand be in every single decision that the doctors make, and that Hope feels His comfort and peace each step of the way.

Thank you in advance friends. I spoke to Hope this evening as she was on her way to NYC. I understood the fear in her voice... the apprehension. But I assured her that we would pray.

Strangers we might be, but at the throne of God, we are united brothers and sisters... lifting one another up.

too much

2009-03-30T09:35:00.006-04:00

Ethan just went down for his morning nap and I decided to catch up on some computer time. Little did I know I was only minutes away from rapid tears streaming down my face in such a way that I had to get up and walk around the bedroom several times before sitting back down at the computer desk.

I started reading some blogs I follow - catching up on some of my favorites - and stumbled upon another blog (my heart breaks because there are soooo many websites of parents asking for prayer for their deathly sick children) of a mom, broken and weary as her 5 month old son fights for his life in the hospital. And though her son is fighting a completely different disease than our Ethan had been fighting, I was immediately taken back into those days of being in the hospital with him. The beeping machines, the various IV and tubes, the nurses & doctors giving hourly updates, the medications.... the fear.... the tears.... the prayers.... the ups and downs. All of it.

And I couldn't have stopped my crying this morning if I tried. But they weren't only tears of understanding the burden this mother is carrying, but my tears were also those of not understanding. Not understanding why Ethan has had his life restored. His life saved. When others do not. Crying in humility that my son is with me here at home, thriving, and this other child is literally a breath away from death. I can't stop the tears even now. I feel so unworthy of such a miracle, and even though I fully know our miracle didn't happen because we "deserved it", I still can't help but feel so small that God would give such mercy to us. I want my child saved. I believe he has been. But I also want these other children... these other families.... to have that as well. And it's so difficult to reconcile it all. But I know, as I've said many times, that God ways and dealings in our lives serve a significant purpose. All for His glory, in whatever shape or form that may be. If Ethan being alive after everything he went through, touches the life of someone else and leads them to the Lord, then that's reason enough for the miracle. And as hard as it is to even type these next words, if the testimony of the family who suffers the loss of a child touches someone (or many someones) who might not otherwise have been reached, and brings them closer to the Lord, then that is likewise a miracle. Father, whichever miracle this weary family receives, give them peace and comfort at this moment.

It's not easy to wrap our minds around it all. Because even now I feel uneasy. But through the weeping I know God has a purpose in all He does and allows. I know it and believe it. Sometimes He asks for what appears to be too much for us to sacrifice.... but He restores the broken pieces. He's faithful and He restores.

Lord, I don't always understand.... but I'm so thankful.... Ethan's life.... his healing..... allow this sobbing state I'm in somehow express to You my thanksgiving. Words fail me.

simple, but sweet

2009-03-25T13:47:00.007-04:00

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A dear friend emailed me this bit of encouragement and I thought I'd pass it along to you...

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Sometimes we wonder, "What did I do to deserve this?"

or "Why did God have to do this to me?"

Here is an explanation that breaks it down in a wonderful way.

A daughter is telling her Mother how everything is going wrong,

she's failing algebra, her boyfriend broke up with her

and her best friend is moving away.

Meanwhile, her Mother is baking a cake and asks her daughter

if she would like a snack, and the daughter says,

"Absolutely Mom, I love your cake."

"Here, have some cooking oil," her Mother offers.

"Yuck" says her daughter.

" Ok, well how about a couple raw eggs?"

"Gross, Mom!"

"Would you like some flour then? Or maybe baking soda?"

"Mom, those are all disgusting!"

To which the mother replies:

"Yes, all those things seem bad all by themselves.

But when they are put together in the right way,

they make a wonderfully delicious cake! "

God works the same way.

Many times we wonder why He would let us go through such bad

and difficult times. But God knows that when

He puts these things all in His order,

they always work for good!

We just have to trust Him and, eventually,

they will all make something wonderful!

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Such a simple illustration, but it makes so much sense. Thank God there's a purpose for the trials He allows. The end result. The big picture. The sometimes uncomfortable, but necessary, parts of the journey leading us ever closer to the purpose and calling in our lives. The cake.

By the way, Ethan's doing very well this week. The rash continues to flair up over his body, but it responds well to the medication. We're still working on getting him to eat more than just formula, but we're being patient and enjoying the small strides he makes on occasion. He sits up perfectly well on his own now, and can get to that position even when he's been crawling around on the floor. He's starting to show an interest in "pulling up", as well, which has been such an exciting experience in his overall development. He's such the star of our family! And an absolute blast to be around. He's so expressive and feisty! (wonder who he gets that from - *no comment* - however, if you ask Adam he'll gladly tell you it's me) Anyhoo, your prayers for us continue to prove God's faithfulness. As always, thank you so much for walking through each step with us.

I pray we all get to see and enjoy the "cake" in our lives.

love your life

2009-03-21T14:49:00.009-04:00

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Love your life.

This post has been swimming around in my head for a few weeks now. I read that phrase, "love your life" one day in passing, when I skimmed the cover of a magazine. They purposefully had the word "your" in bold print. Obviously wanting that piece to stand out - and make a point. Since then, I've thought about those 3 words over and over. And I got to a point shortly after, in which I felt comfortable stating that I do love my life. I wasn't too interested in trading my life with someone else's and I felt pretty good about the direction things seemed to be going for us. It was around that time, that posting about "love your life" here started making sense to me. Like I had some handle on things that I might ought to share with someone else. Well, suffice it to say, the Lord felt it necessary to test my resolve. In essence, He was asking me the question, "Kasey, do you love your life? Really?" And as if it were a live conversation my thoughts said, "of course... things are looking pretty good... why not love my life".

Then a set of events took place in our personal lives that forced me to look deeper into the meaning (and importance) of loving your life.

Let me back up a minute and say that nothing earth-shattering happened in our lives during the past few weeks (I'm secretly hoping we've reached our limit of earth-shattering events for a while), but it was a series of disappointments that though individually were relatively small, seemed to pile up into an overwhelming sense of despair. We'd get our hopes up about something and then have to accept that it wouldn't come to fruition. And then Ethan's horrible rash on his face & diaper area factored into the mix (side note: praise report, his face is sooooo much better!) and many other factors that just squelched my spirit. I felt a sort of envy start to rise up in me that made me feel like giving up on having any enthusiasm for... well, anything. And I started the downhill spiral of comparing our situation with someone else's, or being irritated that we weren't able to move forward towards a desire that we had, and completely moving away from gratitude over the things we did have in our lives. After about 2 weeks of battling with these various disappointments, God brought back to my mind the phrase "love your life". And I (shamefully) remembered how it wasn't but a month ago that I felt "qualified" to write about such a phrase and felt confident that I did love my life (and was thankful for it).

Then it all clicked.

A test.

"Kasey, do you love your life? Even if it's not picture perfect? Even if you have to wait a little longer for the desires of your heart? Even if you don't always get the desires of your heart... can you still love your life? Can you still be thankful for what you do have?"

A ton of bricks... let me tell you.... it hit me like a ton of bricks!

Of course! All of these situations were to force me to take a deeper look inside myself. The Lord couldn't let me blindly assume an area of my life was fully in check, if it really wasn't. It's like thinking you're sincere, only to find out that when pressed a little harder, you realize that maybe really aren't. So when I told myself "life is good!" I honestly wasn't believing that current situations were good, I was telling myself that once "xyz" happens... then life will be good! In a sense, living for the expectation of something happening - and basing my "contentment" on the fulfillment of that expectation - instead of truly being content within the current situation, as is. So when the expectation isn't met, disappointment and resentment show their true color, and you realize (as I did) that your "contentment" wasn't real. See, God knew that about my heart... but I didn't. And in His own way, He allowed me to figure that out. To take an inventory of the goodness in my life and truly be thankful for it. All of it. Even if nothing changed from what it is today - not just with Ethan, but in every detail of our lives - that life would still be good.

My life.

It's very good.

And I'm very thankful to be living it.

Whether it's the roof over our head, the toys for our little tyke, or a husband that knows to keep the refrigerator full of diet dr. pepper and the freezer full of whole wheat blue berry waffles. It's all good. And, I can honestly say - without any thought for tomorrow or what may or may not be in store for us - I love my life.

visit details

2009-03-17T19:41:00.003-04:00

The fantastic news is that Ethan's blood work once again shows all things positive! That is a continued blessing!! It shows that Ethan's body continues to accept the new donor cells and that his body is learning to adjust & function properly.... Thank you, Lord, so very much....

We got to see Ethan's primary oncologist who set up Ethan's treatment protocol back at Ethan's initial diagnosis. He built the "plan" and others helped execute it, but it was good to see him. He walked by our room and stopped in to see how things were going with Ethan. I was able to have a good conversation with him about Ethan's skin issues. The good news is (and I've known this was true) that Ethan's rashes are all a result of his cord blood transplant and his body still accepting the newly growing cells. The bad news is, these types of rashes are never easy to treat and have many root causes (fungal infections, etc). We discussed a plan we're going to be using this week to see if there's any improvement. It requires one ointment on the upper part of his face, and a different ointment on the lower part of his face. For you leukemia mom's out there - and anyone else who's curious - we're treating the upper with Protopic and the lower with Nystatin. And treating the diaper area with an anti-fungal cream (Vusion). Pray these do the trick!

Ethan brought tears to all the nurses when it was time to draw his blood. It was so sad.... he screamed and cried as soon as they walked in.... he just knew. But thankfully again, they found the vein the first time, and got all the blood they needed quickly. And he even got a toy afterwards.

All in all, a very good visit. I'm hoping we start seeing changes in his face and eyes soon. And I'm trusting the details to the Lord. I make myself crazy when I try to figure out all of this on my own and get too caught up in the in's and out's of it all. I was reminded today, to leave it all in God's capable hands. Maybe that was the reason for all of this anyway.... a lesson for this momma of "letting go" and trusting Him.

Thank you so much for your prayers! I read this verse and thought of you, my blog family... our prayer warriors. I pray God blesses you for every kind action done and prayer you've ever spoken on our behalf!

The generous soul will be made rich,

and he who waters will also be watered himself.

Proverbs 11:25

pre-rash pics & some misc thoughts

2009-03-16T14:26:00.013-04:00

First and foremost, I want to thank you for praying for Ethan's rash on his face and eyes. It's still problematic, but we go to the doctor tomorrow and I'm hopeful she'll have some insight on what we can do differently to treat it. Which also means we are "going to the doctor" aka "it's that time again".... blood draw in the arm. I already know Ethan will hate it and will be miserable throughout the experience. However, I do ask for prayer once again that they will get all the blood they need the FIRST time, that they only have to prick him once, and that the results do not show any odd numbers that would require him to be re-tested the following day. One day of this type of drama is quite enough.... I don't want to him to have to endure it twice because the lab made a mistake or something! Pray also that the doctor has complete wisdom and insight from the Lord on what we can do to 1) make Ethan's eyes better, the skin around his eyes is starting to become raw and cracked and 2) make Ethan's face less dry and irritated. Everything we've tried over the past week and a half hasn't helped.

Thank you for your prayers for us tomorrow (Tuesday). I mean that sincerely. Your prayers continue to be a very big part of our lives. Maybe even more than you know.... and I never, never take the fact that you do pray for us, lightly. In fact, I'm still moved to tears when I think about it.

I thought I'd let you know that Ethan's doing a little better about the eating aversion he's had for sooooo long. He's still a very fussy eater, and still primarily on formula.... but he's getting more and more used to solid foods... and though he only takes "baby steps" (no pun intended) from day to day, I'm encouraged that he's slowly broadening his horizon with different foods.

I also thought I'd share with you that I've been a little "off" lately. Kind of lost in thought. There are many explanations for it, but I don't have exactly the handle on things in order to fully express what I mean right now.... but for a long time I've been at a standstill... with most every aspect of my life... taking care of all the details of Ethan's recovery... and I'm craving the opportunity to move forward. For me, Adam and Ethan to move forward. Into what, I'm not sure. But I need to know... to really see... that there's more to this journey we've been on.... to see beauty for the ashes. It's true that Ethan has been doing so very well, and my heart is over-joyed constantly by that alone. But truth be told, we're only weeks away from the one year anniversary of when he was diagnosed, and, it's been a very long road - full of details that no parent should ever have to do or endure. And there's been much that we as a family have had to sacrifice. And though I do believe it all necessary for God's will, I'm truly ready (in desperate need) for a change in this season of our lives.

Choppy waters calmed.

Doors opened.

To gain back what's been given up.

Many times I don't have words to describe what I'm asking the Lord for... in part because I feel as though he's given me Ethan's life and I should be grateful for that alone and not bother to ask for anything else. But deep down, I know better than that. God is more than the box we put Him in in our minds. Mercy un-ending. Yes, Ethan is alive today. And what a precious gift that is to have every single day. But, it's still been a hard road to travel down.... your baby having cancer.... even with a full recovery (which we are still believing in), there's so much that's lost. Especially being a first time parent and the hopes/dreams that go with it all. I'm just hoping for a little bit of all that back. I've been content (sometimes more than others) to walk this road hopefully not too many ever have to travel - but unfortunately I know that too many do - and in all honestly, sometimes I just want to sit down. To stop walking. And enjoy life again.

Well, I think my keyboard is sufficiently wet at this point, so I'll stop here. Thank you for listening.... it really helps me to have you here.

__________________________________

Oh... before I go.... here's our little hero a couple of weeks ago. Just chillin' around the house.

i couldn't resist taking this one...

he was getting in trouble & this was his reaction

adam bought ethan his first UCONN hat... like father, like son

I waited patiently for the LORD;
and He inclined to me, and heard my cry.
He also brought me up out of a horrible pit,
Out of the miry clay,
and set my feet upon a rock,
and established my steps.
Psalm 40:1-2

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update

2009-03-14T09:41:00.004-04:00

Thank you for your prayers for Ethan's rash. I wanted to post a quick update that the rash has not gotten any better. His eyes in fact have gotten worse. I've spoken with Ethan's doctor in Boston and we are trying a new strategy (new medicine) to see if we can figure out the root problem. She told me to give it three days to see if it works.... so far, there hasn't been a change. Ethan's in good spirits, though. I, on the other hand, just grow more concerned. His eyes especially, I just wish his upper/lower eyelids didn't look sooo red and irritated - well for that matter, I wish his whole face didn't look that way.... thank you again for your comments, helpful hints and mostly your prayers!

prayer request

2009-03-11T11:29:00.006-04:00

Can you pray with me about Ethan's rash on his face? I know so many of you have been covering this issue in your prayers anyway, but I just wanted to ask (again) for some specific prayer requests....

We're doing a "trial and error" treatment on his face, and of course, the treatment I used last night made his sweet face horrible this morning. Hundreds of red bumps, very red eyes (lower/upper eye lids) and red inflamed skin all along his forehead, cheeks and neck.

It's a VERY long story, but he's had some worse issues come up in his diaper area, leading me to believe that part of his rash issues might be contributed by yeast.... since he's on a daily antibiotic. SOOOO, if my theory is correct, which it seems it might be since the anti-fungal cream (nystatin) that I've been using in his diaper seems to be working, then there could be other areas of such a yeast rash on other parts of his body. The tricky (and frustrating!) part is that he has a potential of 4 different rashes on different parts of his body that all need specific treatment, BUT are also on top of each other in same areas of his skin, so one necessary treatment irritates another aspect of a DIFFERENT rash!

Excuse me while I let out a muffled scream.

Ok, thank you... I'm back.

Anyway, bottom line, it hurts me to see Ethan's skin suffer. Especially his face, eyes, arms and sensitive areas. One treatment seems to work on part of the problem, and then makes the other "rash" even worse. He sees his Connecticut doc again on Monday.... I'm praying she has some different insight than Ethan's Boston doc may have had.

His eyes.... and his face...... makes me so sad. And oh my his diaper area! You should have seen that 2 days ago. He was in physical pain anytime I had to change his diaper. I'm so thankful the Lord gave me the idea that it could have been a yeast rash that had been developing. He used to get them frequently before his transplant (though not this bad!). It's still not great, but it seems to slowly be getting better.

Anyway, I'm rambling now... at least I am in my head.... so I'll just simply ask that you pray for his skin - ALL of the types of rashes attacking him - and that I (and/or the doctor) will better understand how to treat them all.

Thank you, sweet friend.

*sigh*

Things could always be worse. I do know that. And I'm thankful they aren't. I also know that I need chocolate & a diet dr. pepper... Thank you, Lord they are both only a few steps away!

p.s. - Oh yeah, and I wanted to say thank you to the advice some of you left me before. The aquaphor has been great on the cracks in/behind his ears and in his toes, and sometimes works on his forehead. But when I put it on his face, it seems to have a "pore-clogging" effect. I'm not sure what that's about... but probably means he's got eczema on some of his face, but not all of it. Who knows, but keep any advice coming. I know Ethan's skin is a little different than most because of his transplant issues, but I'm willing to try anything to make that sweet skin happy again!

scripture

2009-03-09T13:02:00.004-04:00

I can remember a few times in my life in which a particular Bible verse became a "favorite" of mine, but I can't remember ever clinging to scripture like I did since finding out about Ethan's illness last year. I've always known the Bible was the Word of God. His direction, His voice to us. But I've only recently truly understood what that meant. Or better stated, what that means.

Searching God's Word became an aggressive part of my first of many days in the hospital with Ethan - mainly the times I was alone at night. That was my time to be quiet & think. And verses seemed to pop out to me left and right. I started marking up my Bible and staking a claim in the hope the Words gave my heart. If you look through my Bible, you will find many verses that have a date written next to it, Ethan's name, and whatever particular prayer request had been on my heart regarding his treatment and healing. Anytime a new "negative" statistic came our way, I would repeat the words "your faith should not stand in the wisdom of men, but in the power of God". Or anytime, I started to lose hope that Ethan would make it through, I would say over and over in my mind, "this sickness is not unto death, but unto the glory of God". Each of these verses became so very prominent to me and the peace they gave me, unmistakable. I knew (and still believe), that God used various scripture from His Word to speak plainly and clearly to my heart. Even to this day, they are a comfort and a reminder... You can see these two verses written on the top of this blog and on the top right corner. And my Bible carries even more of the promises I cling to and claim over Ethan's life.

I don't mean to imply that claiming a verse gives you a sort of "magic potion". God's Word isn't so easily manipulated. But what I am implying, and what I know to be true, is that The Bible is God's Word. And He guides us towards truth, towards peace and towards His promises within those written Words. And like I said, I've never understood that like I understand that now. And I understand the power of His Word. His power. His Word. They are hand in hand.

When I'm uneasy about something in my life... unable to gain victory over the fear, the confusion, etc... I do what I did when I felt those things about Ethan's cancer diagnosis. I search the Bible. I don't always find a relief immediately... and sometimes it has taken weeks or longer to find a verse that satisfied my search for peace over something I was struggling with. But God never forgets. He never forgets my struggle. He never forgets to give me what I'm looking for, even if I forget to keep looking. I think sometimes He makes me wait, simply to remind me that it ISN'T a magic potion. A quick fix. But instead making me understand that seeking Him should be a full time job. A delightful one. Taking the time to listen. Not a panicked, hurried "I need a verse to make this _____ go away". It's not like that. And in the "searching" I'm often shown other verses that I'll need to recall at other times down the road. And the point of it all, is the peace, the true calming that goes beyond logic or reason, that follows once His Word has been revealed. I assure you, it was all I had & have during Ethan's diagnosis/treatment/recovery.

Prayers and Scripture. God. That's all.

Aside from what may be the obvious, there was a point I mentioned this to you. If you've followed my blog for any length of time, you'll know that I've struggled off and on with worry and fear. And for several months now I've been asking the Lord to give me a verse from His Word that I can claim over my life. Some peace for the areas I've been worried about, fearing, or just thoughts I've been struggling with over "the future". I've been asking... but up until last night, I didn't have the peace I've been looking for. And then, actually by accident, I found these verses. And I just knew. I knew they were an answer to my long time worrisome prayers. Not necessarily about Ethan, but about other aspects of my life since Ethan's diagnosis.

Psalm 16: 1, 8, 9, and 11 - 1. Preserve me, O God, for in You I put my trust. 8. I have set the LORD always before me; because He is at my right hand I shall not be moved. 9. Therefore my heart is glad, and my glory rejoices; My flesh also will rest in hope. 11. You will show me the path of life; in Your presence is fullness of joy; at Your right hand are pleasures forevermore.

It's what I needed to be reminded of. It's becoming my prayer....

Preserve me, O God, for in You I put my trust.... You are always before me, therefore my heart is glad and I will rest in Hope.

well... it's never simple...

2009-03-04T19:41:00.006-05:00

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But it's always manageable, right?

Let's start with the rash....

Apparently Ethan has a few different rash scenarios goin' on. Okay, so the rash on his back, abdomen & arms are still the GVHD rash that we've known about for a while, that seems to always respond well to the medication ointment. The rash on his face, is a combination of clogged pores, and eczema. And the sores behind his ears, on his wee-wee and between his toes are in the eczema family as well. His dry and irritated scalp is a form of psoriasis. All three types of rash, of course, have to be treated differently. The face gets no treatment right now since the pores are clogged. The GVHD rash continues to get the medicated ointment. The eczema gets neosporin since they are "open" rashes and the scalp gets baby oil. And any area of the body not attacked by a rash gets Cetaphil cream.

Whew! Very sensitive skin to say the least.... but the doc said even still, Ethan's skin looks great, all things considered. Apparently GVHD can get pretty bad, and Ethan's case is still considered mild. Hard for me as his mom to believe, but I trust his doctor's experience. We can't treat his face so keep praying for the bumps to start going away. And we still aren't sure what's causing the eye irritation. Could be allergies, could be eczema... so pray they get better, too.

Now on to drawing the blood....

If Ethan could describe the situation (which he basically did, with his non-stop screams and giant tears to match!) he would say the whole experience was a nightmare. It took 3 of us to keep his arm still while they drew the 3 viles of blood that they needed. He sat in my lap, and I was basically giving him a hard bear hug. And the nurses were keeping his arm held out tight and straight. He is a very strong child. No, seriously... VERY STRONG CHILD. I tried to warn the nurses. But it didn't take long for them to understand - and hold his arm tighter. He tried to yank his arm away - while the needle was in it?!?! - several times. Not at all pleasant. Horrible is more like it. But it only lasted about 2 or 3 minutes and they only had to prick him ONCE and they got all the blood they needed the first time. I am THRILLED about that!!

However.... Ethan's experience only got worse. Today was also shot day. So about 15 minutes after they drew his blood, and after I'd finally gotten him to calm down... they came in and gave him two shots. One in each leg. Yep, not kidding. And whatever you are currently imagining in your mind about Ethan's reaction to this, I guarantee it was worse. After that point, he immediately started crying and clinging to me anytime someone walked into our room. The poor girl trying to take Ethan's temperature, about an hour later, didn't stand a chance. So here we have it. He's now going to be petrified to go to the doctor. It was only a matter of time, really. But with the central line, he never experienced pain during the visits. He simply enjoyed getting out and flirting with the nurses.

This will no longer be the case.

Oh well.... it could have been worse, right? They found a vein the first time. That was a major blessing. And we have two weeks before he has to endure that again.

Two weeks.... then we repeat.... *sigh*

Anyway, overall his counts look great. And I really felt the Lord guiding the conversation with Ethan's doctor. We talked about many things, and it'd take too long to explain all the details we talked about, but it was clear that God was in the details. I appreciated that so very much. Oh and the doctor didn't feel like the issues with the rash should change Ethan's weaning schedule! She said that his skin will be a factor as his body continues to accept the new growing cells and that all of this completely normal for even up to a year after transplant. She said that his immune system is getting stronger and the sooner he's off the immunosuppressant medication, the better it will become. So she's in no hurry to keep him on it any longer than we'd already discussed. What a wonderful answer to prayer it was to hear that!

Still pray for his sweet skin. We certainly don't want anything to get worse. I sure hope these different tactics show signs of improvement soon.

I've been thinking about something lately, and I'll share it soon.... but the tummy's growling and I gotta go eat!

boston, rescheduled

2009-03-03T18:13:00.002-05:00

Well, yes, our Boston doctor's appointment that was scheduled for Monday was rescheduled for tomorrow (Wednesday) due to our snow storm. But it sure was a nice day at home! Adam had taken the day off to go with us to Boston, and since we didn't go, the three of us had a fun/relaxing day at home. Speaking of Adam, many of you have asked about his hand. Thank you for asking and shame on me for not updating sooner! His hand is doing remarkably better. He no longer needs to go to physical therapy - as long as he maintains the exercises on his own - which he is! He's gaining more ability and control of his index finger, and though it's not perfect and he still has certain limitations, we know that over time, it will be as good as new.

Anyhoo, back to our rescheduled appointment. Ethan and I will leave bright and early in the morning for his check up. His rash is still quite noticeable and not as "gone" as I would have liked it to be.... but I trust the Lord knows and is in the process. You may remember that this will be Ethan's first doctor's visit since having his central line removed. Which means, this will be his first visit in which they will have to find a vein in his arm or hand to draw blood for his blood work. In all honesty, I'm not looking forward to this for several reasons, but my biggest concern (and prayer request) is that they will have no problems drawing the blood the FIRST time and that they will get all that they need without having to re-stick him. I know Ethan will HATE this process (he throws a fit when he's restrained, and myself and a nurse will have to restrain him to keep him still).... so, if you could also pray that this would be as comfortable & painless as possible for him, it would be a big help to my sanity today!

And of course, we want all of his blood counts and labs to come back perfect!! Oh yeah, and pray that the doctor has wisdom in assessing Ethan's rash and what needs to be done about his medication weaning schedule.

Have I mentioned that I couldn't get through all of this process without you and your sweet prayers for us???? Well, I couldn't! And the Lord knows it.... that's why He lead you here.... that's a sweet thought, huh?

And it's true.

prayer request

2009-03-01T13:49:00.002-05:00

And He [Jesus] said to them, “Which of you shall have a friend, and go to him at midnight and say to him, ‘Friend, lend me three loaves; for a friend of mine has come to me on his journey, and I have nothing to set before him’; and he will answer from within and say, ‘Do not trouble me; the door is now shut, and my children are with me in bed; I cannot rise and give to you’? I say to you, though he will not rise and give to him because he is his friend, yet because of his persistence he will rise and give him as many as he needs. “So I [Jesus is still speaking] say to you, ask, and it will be given to you; seek, and you will find; knock, and it will be opened to you. For everyone who asks receives, and he who seeks finds, and to him who knocks it will be opened. If a son asks for bread from any father among you, will he give him a stone? Or if he asks for a fish, will he give him a serpent instead of a fish? Or if he asks for an egg, will he offer him a scorpion? If you then, being evil [unholy/unrighteous/sinful beings], know how to give good gifts to your children, how much more will your heavenly Father give the Holy Spirit to those who ask Him!”

Luke 11:5-13

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I was reminded of this passage of the Bible this morning in church. My eyes skimmed over the page we were reading during the service, and I saw these particular verses and it made me think a little more clearly about an on-going prayer request we've had regarding this pesky rash that continues to spread over various areas of Ethan's body. Over the past week, Ethan's rash (a result of his minor case of graft-versus-host-disease) had spread once again onto his hands, chest, stomach, neck, chin, cheeks, eyes, forehead and scalp. And the medicine/ointment that had worked fairly well in the past, hasn't been as successful this time around - especially with regards to his face. And with this particular medicine I can't treat his hands or his eyes because his hands are always in his mouth, and the medicine can't go into his eyes... so without treatment, they get worse. And the areas I can treat, haven't been showing signs of improvement.

His sensitive skin has been an issue for a while, and just as I was about to be discouraged by the need to have to continue to pray for the rash to go away, these verses reminded me that there is reward for persistence. So I thought of you - my blog family - and wanted to ask if you'd once again join us in praying for Ethan's rash to go away. I am really concerned about his face, especially his eyes. They are just so very red and look irritated. The rash and bumps have just about covered his entire face and it breaks my heart to see his skin attacked in such a way. Which brings me to the other side of this prayer request.... I believed I've mentioned before that we've started weaning his final medication (called cyclosporine). The medication that is supposed to prevent graft-verses-host-disease (GVHD), and he has to be fully off of this medicine before he will be allowed to be in public places and around people again. So, I suspect that the doctor's reaction will be around the fact that since Ethan's been weaning off this medicine, and the rash has gotten worse, then he's probably not ready to be weaned.... which would keep him in isolation that much longer.

So....I'm praying 1) that the rash starts to show signs of immediate improvement, especially around his eyes and face and this GVHD on his skin will clear up and be a non-issue & that 2) he can still be weaned as scheduled with no complications. So that we can look forward to a wonderful summer together without any restrictions!

We're supposed to be going to Boston tomorrow for his check-up, but we're expecting a rather large snow storm overnight tonight (up to 15 inches!) so I bet we reschedule. But that could very well be a blessing in disguise, because if Ethan's doc saw him tomorrow, she may make a judgement call on extending Ethan's medication time frame.... so having to reschedule the appointment means we'd have an extra day or so to let the Lord work first!

Thank you for your prayers.... I really wish you could know how overwhelming grateful we are for each one of them.

peace

2009-02-26T11:52:00.003-05:00

I was talking the other day to a friend of mine about the road we're traveling during Ethan's "recovery period", and she asked me if everything was now over. It had been a while that I thought about that, until our conversation, but as I quickly thought through everything we've gone through with Ethan's whole cancer diagnosis, treatment and now recovery - I told her that there were two answers to that question.

As far as I was concerned... or as far as I believed.... it's over. But from a medical standpoint and all of the statistics involved once you've been labeled a "leukemia patient" he will be monitored by some degree for probably the rest of his life... the longer that he remains in remission, of course, the less worry the doctors will exert. But it will still trickle down into other aspects of his life... watching for long term side effects from chemo, radiation and the other treatments. I told her that during those "check ups" I'm sure I will have a knot in my stomach each year just because I can't see how in our human nature, we wouldn't have a slight dose of anxiety... but in my heart, I truly do believe this is over. The miracle is ours. I don't understand the grace and mercy behind it - in the sense that I don't know specifically "why" our son was spared... but I know that he was. And I fully know that it was only the power of God.

I do have moments when it will hit me... Ethan had leukemia.

Ethan is recovering from having cancer.

CANCER.

My baby boy had cancer.

Our son, 11 weeks old at the time.

Diagnosed. With. Cancer.

What in the world?!?!

And I do re-live various moments of the entire process... but just like an umbrella shields you from getting wet in the rain, there's an umbrella of peace around each of those memories. The Lord was there. And it was clearly evident every single day. It's still clearly evident. I remember praying and even writing here in an older post that I not only wanted Ethan to survive, but that I wanted him to thrive. And I assure you, there's not a better definition of the word "thrive" than in our little Ethan. You'd NEVER NEVER NEVER even guess that he's been sick a day in his life, let alone fought leukemia.

Sometimes I can't wrap my mind around God's mercy. His love. But I tell you one thing, I know it exists. I know that better than I know anything else. And most of the time, nothing else matters. Our son is here. He's alive. He's strong (and strong-willed!). A miracle in the truest sense of the word. And he's mine. There aren't even words to describe the gift. How do you say "thank you" to the Lord for such a thing. Yet, I find comfort in knowing that He knows my heart.... He knows my overwhelming thankfulness. And outside of that, I try to thank Him by giving Him every bit of glory and praise for it.

People have told me on many occasion that they'd not be able to deal with something like this if it happened to them. As if I must have some supernatural strength or faith. And I always tell them that if it weren't for the Lord, I'd have fallen a part a very long time ago. I was trying to think of a better explanation and I remembered the verse Philippians 4:13 - I can do all things through Christ who strengthens me. Now as many things as that verse gets applied to, it's the only truth that explains how our family has endured the biggest trial we've ever faced. I can do all things (yes, even a deadly disease being allowed to enter your child's body) through Christ who strengthens me. That's it. Plain and simple. It is not me. It is not my own strength. It's not that I have the secret to the "right amount" of faith. It's only - and I do mean, ONLY - that God gave me (and Adam) the right amount of everything in order to withstand the pain, confusion, hurt, disappointment, etc. His strength in me. His peace in me. His mercy on me. His grace on all of us. His purpose. His plan. All we did was try to open our hearts to Him and trust Him.

And in the tears or the smiles....

He gave us what we needed, when we needed it.

cell phone cameras sure are handy....

2009-02-23T21:00:00.004-05:00

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Reading with mommy....

Getting into the diaper basket.... and quite excited about it...

Getting into the mail that was accidentally left on the floor....

Say cheese!

Saying "ma ma" during play time....

Then a morning nap time.... for both of us! Since this was the morning he woke up at 4:30....

Looking for a new adventure....

Look at me! I crawled inside!

Someone is quite proud of himself.... What a cutie pie!

First bath since having my tubes removed! WHAT IS GOING ON?!?

Check me out! I'm having a blast splashing around....

Look at my chest! Just a tiny band-aid instead of a very long tube! I'm a free man!!

Just a glimpse into our some of our days.... Good times!!

Every good gift and every perfect gift is from above,

and comes down from the Father of lights.... James 1:17

eventful couple of days...

2009-02-22T16:01:00.006-05:00

Well, kind of. The morning after Ethan's little surgery to have his line removed, he had terrible vomiting. Most likely a delayed reaction from the anesthesia. And then all day he had a low-grade fever. Most likely nothing to do with the surgery/anesthesia/vomiting, but instead a tooth that was about to break through his gums. It was a mildly stressful day because his low-grade fever got up to 101, and you know the drill by now.... if his fever goes over 101.3 it's an automatic trip to the emergency room since he has a weak immune system. I was checking temps in both his ear and under his arm and thankfully, it mostly hovered around 99.5 & 100 and by 10:00 that night, it had dropped to 99.1 and was completely back to normal the next morning. I gotta admit, though, that the whole day of wondering - are we going to the hospital or are we staying home - left me once again EXTREMELY thankful for being at home. I know we don't get to get out much since Ethan can't be in public places just yet, but man oh man, home sweet home is so much better than having to stay in the hospital... trust me... I'll take this isolation period with pleasure if it means we get to have the comforts of home!!

All is much better now. Ethan's chest is healing quite nicely, and his tooth broke through this morning... so we are back to normal around here. Thank you all for praying for us. I'm still amazed at God's mercy and protection over little E. Every day I am overwhelmed that I have another opportunity to be his mom. He's thriving, truly thriving.

His life means so very much to me....

-
There's a song that's been in my heart lately. I remember singing it in church when I was a little girl - and to this day - the words ring sweet in my soul.

Oh, how He loves you and me,

Oh, how He loves you and me.

He gave His life, what more could He give;

Oh, how He loves you,

Oh, how He loves me,

Oh, how He loves you and me.

Jesus to Calv'ry did go,

His love for mankind to show.

What He did there brought hope from despair.

Oh, how He loves you,

Oh, how He loves me,

Oh how He loves you and me.

-
Oh, how He loves you and me,

Oh, how He loves you and me.

He gave His life, what more could He give;

Oh, how He loves you,

Oh, how He loves me,

Oh, how He loves you and me.

hip hip hooray!

2009-02-18T19:49:00.005-05:00

Well, it was somewhat of a long day, but truly, Ethan could not have handled things better....

We weren't planning to leave for his day surgery appointment today until around 11:00 this morning. His surgery was scheduled for 1:00 pm. So, I treated our morning fairly routinely - except for not being able to feed him anything but Pedialyte before 9:00, and nothing at all afterwards. Anyhoo... I'm sitting in our recliner, eating some oatmeal, and watching a Blue's Clues video with Ethan while he's playing on the floor. It's about 8:15 in the morning. As I take my last bite of my breakfast, my cell phone rings. I recognize the hospital's number by now. The nurse on the other end of the line proceeded to tell us that there was a cancellation, so they wanted Ethan to come in right away. Did I mention that I was still in my pj's? When the nurse asked if we could leave right away, I jokingly said that I'd need to brush my teeth first, and she honest-to-goodness said "don't bother, we need you guys to come in now!".

Of course, I still brushed my teeth and tried to look somewhat presentable... but then we were out the door! By 8:45, we are checking in at the appropriate floor. And apparently, Ethan wasn't the only patient they had called in a panic to move up all the day's appointments. This is where God's sweet presence was quite obvious. Ethan and I had to wait in the pre-op area for about 4 hours. So glad we rushed, huh? No, I'm just joking. It ended up being just fine. Ethan was mesmerized by the hustle and bustle of people and kids all around him. He was soaking it all in. Never a fuss. Never a cry. Just observing. He was wonderfully well-behaved... and wow, was he patient! At 12:45 he went in for his tube removal, and fairly quickly was out in recovery. He was crying now, but only because he wasn't sure what was going on. And the rest of the night, he's been his normal, spunky self.

And.... without any tubes hanging out of his chest!!

I can barely believe it. I know it will make drawing his blood more difficult, but oh, what a sweet thing it is to see his chest free and clear. He can wear normal shirts now... take baths... and crawl around to his content. He can even go around the house shirtless if he wishes.... because there's no more fear of him tugging those lines or hurting himself with them. I'm soooo excited!! He has some bandages on him that I can remove on Friday, and hopefully all looks great when we take the bandages off. My parents and I were reminiscing about how it's been just over 10 months since these tubes were inserted into his chest and veins. He's just over 12 months old, so you can see how long it's been since he's had his central line. It has served a wonderful purpose for his treatment, but what a joy to have them gone!

Thank you so much for your prayers today. Everything went very smoothly. And Ethan did so so so well with all the hiccups in between. He was such a good boy!

Romans 8:38-39

For I am persuaded that neither death nor life,

....nor things present nor things to come,

nor height nor depth, nor any other created thing,

shall be able to separate us from the love of God

which is in Christ Jesus our Lord.

central line update

2009-02-17T09:08:00.005-05:00

Ethan's doctor appointment went well yesterday - all of his counts from his blood work came back great (praise the Lord!!)! And, I was able to show the doctor the terrible issues we are having with Ethan's central line (tubing coming out of his chest) and how awful the skin around the bandage has become. The soonest appointment we could get to have the line removed is tomorrow afternoon. I'm very excited about this! However, I'm nervous too.... because his surgery is set for late tomorrow afternoon, and he cannot eat after 9:00 tomorrow morning. This is not going to be pleasant.... It's a simple surgery to remove the tubes, but anesthesia is still necessary. We'd be grateful for your prayers for his frustration while he can't eat, as well as your prayers for the actual procedure. It will be so nice to have his chest free and clear of any tubes and finally be able to dress him in normal shirts - AND - give him a full bath!! We've only been able to sponge bathe him so as to not get the bandaged area wet... but soon we can splish-splash all we want!!

Thank you for your prayers for us tomorrow (Wednesday)!

let's move on... shall we?

2009-02-16T07:56:00.004-05:00

I wanted to say a sincere thank you to everyone who sought to encourage me yesterday and today. I was surprised by the personal attacks from the anonymous individual, but have come to understand that it's not my issue to carry. I know who I am through Christ and I know the love I have for Him, and my family. And the love that God has allowed so many of you to have for us. I thank you for such a sweet blessing. I've decided to delete all of yesterday's online "activities" because much like a red sock can ruin a laundry load of stark white towels, I don't want such a stain to be a part of Ethan's one day reflections over this time in his life. There are people who will always misunderstand us, judge us, hurt us, etc.... but a sweet friend's email reminded me that Jesus was treated no differently during His time on earth - and He always sought to forgive. And we are called to likewise forgive those who hurt us... or try to. My peace is from God, my strength is from Him and that's all that matters today. He is my defense.

I would also like to ask for your prayers for Ethan's doctor visit today. We are trying to get him scheduled to have his central line removed ASAP. He has started pulling on it and scratching at it so hard that the skin around the area is starting to bleed. Quite problematic!

Thank you for your prayers. Thank you for your encouragement. I read all of your words and smiled at the love many of you have for our family. Sweet blessings back at ya!

happy valentine's day!

2009-02-14T11:40:00.008-05:00

This is my 200th posting on this blog.... I can't believe that. 200.

Wow.

To celebrate the milestone, I thought I'd let our little man do all the "talking".

Thank you for following Ethan's journey... you each continue to be a blessing to us.

Praise the Lord for answered prayers.... 200 blog posts, and going....

a crossroad

2009-02-11T21:04:00.005-05:00

From about the age of 5, we know what the plan is. Yep, after the first few months of kindergarten, we learn that next year we will move into First Grade, followed by Second Grade, Third Grade… soon to hit Jr. High, leading us then into our High School years. So, from the time we’re 5 years old, we have an understanding of what our life will involve for the next long while. There’s no real dilemma. Well, aside from the unfortunate and inevitable adolescent struggles.

Then comes graduation day. Based on whatever plan you’ve already decided upon, or in some cases, what has been chosen for you, you move on to the next step of your life. College, the military, the family business, etc. If you were like me, college was the obvious choice and the one I never questioned. Much like I never questioned whether or not 7th grade would follow 6th grade. I just knew it to be so. Each previous step designed to propel me into the next one. My logical thought process while in college was to graduate, find a good job & get married. Though, I didn’t necessarily have a preferred order in which those events had to occur... However, they ended up falling into place rather traditionally. Graduated after 4 years, landed a very good job in a large company just months before graduating, and met my husband not long after. Nothing was too surprising for me. I went to the college I wanted to go to, got the degree I worked hard for, I got married and after a few years, I had a baby boy. To a certain point, I never really had to question the next step of my life. Of course, I didn’t know all the details - quite a bit of learning as I went along, actually. If our life is a path we walk down, then my path had it’s various forks in the road. Like most do. And on occasion, it took me a while to realize that I chose the wrong direction and had to turn around and start over. But I assume that’s quite usual for most of us. And, though I may have needed “directions” along the way, I always knew what it was I was heading towards next.
-
Until recently…..
-
So what happens when all of the things on your “early years” checklist have been checked off, and a few (major) curve balls have been added to your overall life experience that you’d never anticipated. What happens when your life is no longer mapped out in front of you like it was when you where a child/teenager? What do you do when you take a minute to stop and re-evaluate the path your on, only to realize that you can’t see anything. And instead of there being a simple fork in the road, you see a 4 way stop. What path is your life meant to take now that there is no “road map”… no laid out plan to follow? And the aforementioned curve balls have changed your perspective on just about everything in your personal life that you once understood?

Well, that is a poor attempt to summarize where I’ve been as of late. Standing in the middle of a crossroad and not at all sure what it means. Not at all sure what the next step should be. Not at all sure what the next step will be. So, being the reflective person that I am, I’ve been doing a bit of self-examination. Wondering why I haven’t been able to see “life” beyond what I know it to be right now. Looking for the Hope that got lost somewhere in the process of finding my footing in my own life, once again. And I’ll be honest, my “research” hadn’t produced much of an answer to the apathy that had set in. In fact, my being oddly content in that apathy, became quite problematic in my day to day living. I knew how to be Adam’s wife and I knew how to be Ethan’s mom, but I forgot how to glean joy from either of those roles because I became so afraid of what joy would be robbed of me again, should I let myself get my hopes up about something involving them or me.
-
It actually became quite a depressing way to live.

But then I realized something, well… am realizing something.

My life hasn't stopped. I did. I stopped living it. Content to let each day pass me by, assuring myself that no effort of Hope spent, meant no Hope wasted - no Hope that could be taken away. Low expectations = low disappointment. But really, all it meant was that I had given my future over to fear. Simply resigning to allow myself to look forward to nothing, believing that if I did that, I couldn't be hurt.

See, the plan didn't stop. The purpose is still there.... my purpose. The path didn't end. I simply stopped walking.

So what does one do when they are in need of direction?

Pray. Become quiet before the Lord... for however long it takes. And allow Him to lift the veil of fear that had been covering your eyes. My eyes.

When I look through His eyes of love and grace, I see I'm not standing at a 4-way stop after all. It's still the path of my life. There's not even a fork in the road this time. Simply a straight path in front of me, and it's path lingering behind me. One choice to be made. Turn around and linger in the past. Sit down in fear, never to further open the gift of the days ahead. Or... take a step forward in Faith.

I took a step today.... a step forward. Reclaiming my life from the grip of fear's stronghold. I can't control the future. I understand that. But what I failed to remember, is that my future is in the palm of God's hand.

And He has never left me without the desires of my heart.

For I know the thoughts that

I think toward you [Kasey], says the LORD,

thoughts of peace and not of evil,

to give you a future and a hope.

Jeremiah 29:11

make a way

2009-02-08T15:28:00.006-05:00

I thought I'd share a few things while I was online today....

First, just some recent random pics of Ethan. The first one is of me and him last week at his doctor's appointment in Boston. Pay no mind to my cheesy expression... I was trying to distract him from the long wait we had before the doctor came in, by taking funny pictures of us with the camera in my cell phone. The next is just him chowing down on some goodies at the high chair... he's getting much better at it! And finally, our little cutie, in motion!

The second thing I thought I'd share is just a prayer request regarding Ethan's central line in his chest. With his new ability to crawl around, it's getting much harder for the adhesive on the bandage to stay put. So as he moves and wiggles, the bandage becomes loose and starts to come off. This isn't a good thing, because it puts him at risk for bacteria and infection in the insertion point of the tube going into his skin. We are only supposed to change the bandage and clean the area once a week to minimize exposure, however, lately we've had to change it more frequently. The skin around the bandage has become very irritated and Ethan scratches it, thus tugging at the bandage area, and even pulls it off this way as well. It's become a bit problematic and we're praying that no serious problems arise as a result of these situations we're dealing with in trying to keep the central line "safe". He needs this for a few more months, so please pray no bacteria/infections creep in and that he will stop "playing" with it. The tubing itself is also showing some wear since he's had it in him for so long. Pray everything remains good with his lines until it is time for them to come out. You can see the central line I'm refering to in the picture over on the top right hand side of this website. See the two white tubes that come out of his chest, and the bandage at the top? That whole package is his "central line". Imagine trying to keep all of that out of his reach (we pin the tubes to his clothes so we or he can't inadvertenly pull them), keeping the bandage in place (the bandage is protecting the area at which those tubes go into a chest and into a vein), and not damaging any of it in the process :-)

And finally, I thought I'd post the devotional I read the other day from "Streams in the Desert".... titled, Make a Way.

"I will make all my mountains a way" Isaiah 49:11

God will make obstacles serve His purpose. We all have mountains in our lives. There are people and things that threaten to bar our progress in the Divine life. Those heavy claims, that uncongenial occupation, that thorn in the flesh, that daily cross -- we think that if only these were removed we might live purer, tenderer, holier lives; and often we pray for their removal.
"Oh, fools, and slow of heart!" These are the very conditions of achievement; they have been put into our lives as the means to the very graces and virtues for which we have been praying so long. Thou hast prayed for patience through long years, but there is something that tries thee beyond endurance; thou hast fled from it, evaded it, accounted it an unsurmountable obstacle to the desired attainment, and supposed that its removal would secure thy immediate deliverance and victory.

Not so! Thou wouldest gain only the cessation of temptations to impatience. But this would not be patience. Patience can be acquired only through just such trials as now seem unbearable. Go back; submit thyself. Claim to be a partaker in the patience of Jesus. Meet thy trials in Him. There is nothing in life which harasses and annoys that may not become subservient to the highest ends. They are His mountains. He puts them there. We know that God will not fail to keep His promise. "God understandeth the way thereof and knoweth the place thereof. For he looketh to the ends of the earth, and seeth under the whole heaven"; and when we come to the foot of the mountains, we shall find the way.

"The meaning of trial is not only to test worthiness, but to increase it; as the oak is not only tested by the storm, but toughened by them."

2 corinthians 12:9

2009-02-06T12:02:00.002-05:00

"My grace is sufficient for you...."

ethan update

2009-02-02T19:44:00.004-05:00

Ethan and I went to Boston today for his check up and he got another clean bill of health today! All of his blood counts & levels look good, except for a new elevation in his phosphorus levels. This is expected to be a result from the medication he's on which can have an adverse effect on kidney function - which is also assumed to have been the culprit behind his high potassium levels in the past. So the high phosphorus is a slight concern and prayer is needed that it doesn't get any higher. However, the bigger, or more overall prayer request is that starting today, Ethan will officially start weening off of his Neoral medication (aka: cyclosporine medicine, for those of you in the chemotherapy/cancer/marrow transplant world). This is a huge blessing, because Neoral is an immuno-suppressive agent which weakens/suppresses the response factor of your immune system in order to prevent your body from rejecting the necessary engraftment of the new marrow cells. If you've followed my blog for a while, you'll remember me asking for prayer that Ethan would not get Graft-Versus-Host-Disease (GVHD). Well, this medicine has been working to keep that from happening. Yet, it also keeps his immune system weak, puts pressure on his kidneys, and messes with other aspects of his body. All in all, Ethan has handled the heavy medication quite well, and the only signs of GVHD he's ever shown was a mild rash. THIS ALONE IS A HUGE ANSWER TO PRAYER!

The new prayer request would be that the GVHD doesn't decide to suddenly spring up as a result of Ethan starting to be weened from the medication. It will be a 10 week weening process, and if all goes well (meaning he responds well to being off the medication) then we can start re-introducing him to public places by mid-April! The way it's set right now is that he will be fully off the Neoral medication on April 13th... just five days after his one year mark from being initially diagnosed with leukemia last year on April 8.

Please pray over this specific situation. Pray the weening process isn't interrupted by any negative side effects, continue to pray against GVHD, and continue to pray for Ethan immune system to develop strong and infection-free.

We're getting close to being able to be "normal" again, and I'm looking forward to that so much. I'll admit, though, that I felt an odd surge of panic go through me today when the doctor was casually explaining the long-term plans for Ethan's follow up visits in the years to come. His one year mark from the date of his transplant will be in August of this year. And each year after that, he will be seen by the doctors in Boston to monitor for any long-term side effects from the radiation, heavy doses of chemo and the actual transplant. His eyes will be checked each year for cataracts, his ears will be checked to show no strain in his hearing, his heart will be check for any changes in the 4 chambers, his lungs will be checked for any complications, etc. Of course, I knew a long time ago what the long-term side effects could be (I refuse to say what the side effects "would be", because I'm believing in the 'whole package miracle'...) however, I did feel an initial lump in my throat, realizing again that we'd be under this umbrella for about another 10 years or more. But as the day has worn on, I've mentally crawled back to that place of hope and faith I stood on before Ethan underwent any of these "dangerous" procedures.... and I've decided that each year that we have to go back for a long-term side effect and remission "check up" will be another year that we're reminded of the miracle of Ethan's life. And every year, when they don't find a single thing wrong with any part of his body, we will get another opportunity to tell the wonders of God's hand.

And you're a part of that, ya know. A huge part. Your prayers.... I simply can't thank you enough. This month makes 6 months since Ethan's transplant, and if you looked at him today, you'd NEVER know anything had been wrong with him. You'd never guess in a million years that this little boy ever had cancer in his body. He's as perfect as a little 12 month baby boy could be. And it makes me sad that I will never be able to fully express to you the impact you've made on our family. On Ethan's life. I don't know what God's plan was with Ethan's disease... but I know He's heard you... He's heard us.... and our son is living proof.

...so much I am thankful for...

he did it! he did it!

2009-01-30T14:33:00.005-05:00

Woo hoo!! I was content to not see this day for a long time... or possibly never see it. And keep in mind that our cutie pie doesn't even have his first physical therapy session until next week!!!

Yes, ladies and gentlemen.... Ethan crawled today!

It was soooo funny! Too bad no one else was here to see how pleased he was with himself. As he commando-crawled his way across our living room floor towards my purse. He was laughing and smiling with each scoot forward. It was hilarious! And I'm just so proud....

Just thought you'd like to know!

Oh, and guess what else. Adam has reserved me a night away tonight at a hotel down the road - hot tub & heated in-door pool, oh and room service included. Needless to say... music to my ears! Be sure I will be sleeping in - late - in the morning. YAY!!

He's the best.

hmmmm....

2009-01-29T08:15:00.007-05:00

Thank you all so much for your sweet comments and emails regarding Ethan's birthday.... such an encouragement you are! As usual!

Ethan has his development evaluation yesterday, and I must say, he did quite well adjusting to the "stranger" in our house. She was able to observe him doing all his natural daily things, and I was really happy about that. He does qualify for their services, however, they seem to think that his aversion to eating is not a serious problem. It's more that he's in the "habit" of wanting the bottle, but he will self-feed a little as well. So the trick will be exposing him more often during the day to finger foods and pull back (a little tough love) on the amount of formula he takes in a day. The pediatric therapist has tips for this, as well as for his motor skills that are slightly delayed (crawling, standing). We start his first therapy session next week, and it will continue once a week until we feel satisfied.

I've been a bit distracted this week, which is probably why you haven't heard from me much. Have you ever had reason to try and reconcile your gratitude for all things in your life, with your disgruntled feelings of how monotonous your life is? Well, that's my best way to describe this mood I'm in. I am so very thankful. But also so very apathetic towards the same things/routines, day after day after day. It's a strange thing. Loving Heaven's blessings but wanting the human joys as well. A friend suggested that it is probably something along the lines of this whole past year, finally catching up to me, and my needing to "check out" from it all. Not that I would trade my position as Ethan's mom for anything in the world! But, I don't quite understand my life. Or better, my role in my life. At this point, it's not exactly what I thought it might be. But then again, I can't say I don't have everything I've always wanted. Aside from being so extremely blessed to be with my son, loving him, playing with him on a daily basis... I need an outlet. A tangible one.

Well, I'm sure I've lost most of you by now with my incoherent ramblings, so let's just chalk it up to a bad mood. It's okay to admit that we have them. It's okay to admit that they may even last a few days. And it's okay to admit, though we never would!, that we enjoy feeling sorry for ourselves. Giving us the excuse to not have to deal with the issue that's really bothering us, content to simply say "I'm in a bad mood" or "I'm having a bad day". Like that justifies everything. Choosing not paying attention to the fact that we eventually have to snap out of it and get to the root of the problem.

Well, Ethan's crying.....and I see that's he's ripped his bandage off his central line in his chest (don't worry, just the bandage, easily fixable).... so it looks like dealing with my bad mood will have to take a backseat to taking care of my little boy.

Hmm. That's too bad.

*wink*

party time!

2009-01-26T13:24:00.014-05:00

What fun was had Friday night! We celebrated Ethan's first birthday with a party at our home that evening. Since he's still on isolation restrictions due to his immune system still in the "healing process", we could only invite over both sets of grandparents... which was good, actually, because I think a house full of people would have scared the birthday boy... he's not used to seeing that many bodies in our living room all at the same time! But, we had a blast.....

Ethan loves Baby Einstein videos, so we went with a "Baby Einstein" theme for the big day! And yes, mommy did go overboard with a large banner that says "Happy 1st Birthday, Ethan". But really, who can blame me... *wink wink*

This was Ethan's cake.... we adults had our own Carvel cake & ice cream cupcakes!

A lovely Boston Red Sox themed gift basket.... very nice!

Yummy tissue paper... we opened presents first.... little did he know that icing would soon be replacing the delicious wrapping paper.

I ended up opening the rest of the presents while Ethan watched in amazement.... He made out better than he did at Christmas?!? Wow. And alot of these gifts (and others not included in this pic!) were from other friends and family... you guys are great!

Time for cake.... I'll let the pictures speak for themselves.... this was by far my favorite part!!! SO MUCH FUN!!

Oh, and little E wasn't the only one who ended up with tasty icing on their face....

After a quick sponge bath, Ethan decided he'd found two more toys to add to his collection....

Happy First Birthday, Baby! We love you so very, very much.

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

happy birthday, sweet baby boy

2009-01-23T07:34:00.013-05:00

One year ago today, you arrived....

We took you home shortly after, amazed at this little person who had completely changed our lives in such an instant....

The weeks went by and we began to see fully grasp the miracle that we had been blessed with...

Loving you.... getting to know you....

And... little did we know that we'd not get to witness one miracle through your life.... but two.

You've taught us so much, sweet Ethan. Through you, our beautiful little boy, God has taught us all so much. And here you are... one year old. I remember this day last year with such perfect description. I remember this whole first year of your life that same way. Your life is so very special. We will always know that. And we want you to know how you have forever changed our lives. Beautiful, beautiful ways that we've only just begun to know. Happy Birthday, Sweet Boy.... And thanks be forever to the Lord....

..... For my heart rejoiced in all my labor; And this was my reward from all my labor. (Ecclesiastes 2:10)

both appointments went well...

2009-01-22T14:07:00.004-05:00

Mine and Ethan's :-)

I saw my doc this morning, and all is fairly normal in my world - no need to incriminate myself to you with regard to pointless details such as weight or my need for more vitamins. However, I was very happy to learn about some prescription migraine medicine.

So, let's move on to more important information, Ethan's appointment yesterday went fabulously well! It's confirmed. He no longer needs to be seen weekly. Every two weeks is satisfactory. A further testament to the ongoing miracle. It's truly amazing... how well he's recovering. I could cry (scratch that, am crying) just thinking about it all. He's such a beautiful, healthy boy.....

Who happens to be turning ONE tomorrow! I'm speechless.... but I won't be later.... lots to say here, but it will have to wait for the big day.

Ethan wanted to say hi - he's looking up at me from he bouncer, reaching his hands up in the air.... I'm going to let him type a few words (no motherly intervention.... let's see what he has to say).

hyrtr7yuooioo gigituir8iritfb g jhm8hgggggggggggbb

Hmmm... lots of banging. He's a definite fan of the space bar. And food. So I better go feed him!

Talk to you all tomorrow! Oh and here's our cutie eating a snack yesterday, waiting for the doctor to come in. Don't ya just want to squeeze him!!

hi there

2009-01-20T13:09:00.005-05:00

I can't believe it's been 15 days since Ethan has had a check up from either Hartford or Boston. I've gotten out of the habit of taking him to the hospital! However, tomorrow we make our way to Boston to make sure he's still doing as good as he has been so far. Be in prayer for the appointment. Also say a prayer for me... I've been a little out of it these last few days. Going back and forth between a migraine attack and an overall "lousy" feeling. Not sure the culprit, though, I have a doctor's appointment for myself this Thursday. Needless to say, I'm overdue for a physical.... fun, fun.

I can't thank you enough for all your sweet words of encouragement and your kind, self-less prayers for our family. I can't express in the detail I'd like, how much God has used you to touch our lives through this "blog family" that has developed. And in just a couple of days, those of you who didn't know us before April 2008, will get to see glimpses of our little miracle's first few days of life! I can't believe it's already been a year.... almost!

Therefore, having been justified by faith,

we have peace with God

through our Lord Jesus Christ,

through Whom also we have access by faith

into this grace in which we stand,

and rejoice in hope

of the glory of God.

Romans 5:1-2

oops

2009-01-18T08:48:00.009-05:00

Thank you all for your prayers for Ethan's evaluation on Friday.... however.... the two ladies weren't able to come. One lady woke up sick and didn't want to give any of her germs to Ethan (which I thought was very thoughtful of her!), so we had to reschedule for the 27th. I just asked God to take all your sweet prayers and apply them to his re-scheduled date :-)

Before I go, I thought I'd let you all take a peek into our little man's adventurous side. Friday morning, I took a second to grab myself a drink from the kitchen. When I left, Ethan was over here... on the far left side of our living room.

And when I came back, literally 30 seconds later, I found this!

I keep a basket of diapers downstairs so I don't have to run up to his room every time he needs a diaper change. Well, in the split second I was gone, he rolled himself to the far right side of our living room, over to the basket, pulled it down and was literally throwing the diapers out of it. He'd pull a diaper out and throw it behind him... & when he saw that I was back in the room, he paused, looked at me, and gave me a sheepish grin that just made me melt & then went back to making his mess. It was soooo funny! I laughed so hard. For a little tyke who doesn't crawl, he sure gets around!

Thankful for everything.... by the grace of God....

happy friday

2009-01-16T07:00:00.000-05:00

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I would appreciate your prayers for us today (as I always do!). We have a pediatric physical therapist and an occupational therapist coming over this afternoon to conduct an evaluation on Ethan's abilities/inabilities. Be in prayer that he will either qualify for early childhood intervention, or that if he doesn't, they will be able to give me tips and ideas on how to get him to further develop - especially in the area of eating. Pray also for Ethan's overall behavior. Not being able to be around people very much, I'm not sure how he will respond to having 2 strangers in the house. I'm just hoping he's responsive and has fun with everything.... as opposed to an hour long cry session.

Oh, and who knows what happens exactly one week from today??

Well, I'll tell ya! Next Friday (January 23) Ethan turns one year old!

Can you believe it?!?!?

PRAISE THE LORD!!!

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.

Psalm 33:21-22

back to basics

2009-01-14T07:51:00.003-05:00

If there was a group/meeting for folks who have a problem with worrying, I'd probably be president.

Hi. My name is Kasey and I'm a worrier.

I've mentioned before how I've been struggling with fear. Well, it's not hard to figure out that Worry is Fear's best friend. Because, they walk hand in hand with one another, everywhere.

Worry spurs on Fear, encouraging her growth more and more every day. And if you, being the host of such a pest, aren't paying attention, you can think that a struggle with Fear is the sole root of your problem.

But you'd be wrong.

Worry. Fretting. Letting your thoughts of all the possible "what ifs" get out of control. That's where it begins. Worry is the foot-in-the-door for Fear.

I've been a worrier for as long as I can remember. Yes, even as a child. I specifically remember being on a swing, in either the 2nd or 3rd grade, having a conversation with my friend about a particular worry/fear I had at that point. And even though I was so young, I assure you, it was quite a "legitimate" concern for a person of any age. And so it began.

Worrying.

I've told you before how I believe coincidences are divine interventions, right? Well, I found it beautifully coincidental that our pastor has recently been talking about this very thing. And an even more beautiful coincidence is that even with Adam and I having to rotate which services we go to, so that the other can stay home with Ethan, "my times" were both during our pastors back to back message about Worry. See, God knows what we need, even before we ask.

In his messages, our pastor explained further about what God has to say about worrying. It's from a passage in Matthew 6 that I'm quite familiar with, however, was in desperate need to hear again. And during his messages, I finally understood that trying not to fear or be afraid of the future, wasn't ever going to work successfully if I didn't first stop worrying. Because I don't know about you, but I never worry about good things happening... I worry only about the bad things happening. Which of course then leads to being afraid of such things happening. Vicious circle I assure you.

Anyway, God's whole point on the matter is to not do it. Do not worry. In fact, He commands us not to worry. And if we are worrying, He commands us to stop. Here, see for yourself....

Matthew 6:25-34
“Therefore I say to you, do not worry about your life, what you will eat or what you will drink; nor about your body, what you will put on. Is not life more than food and the body more than clothing? Look at the birds of the air, for they neither sow nor reap nor gather into barns; yet your heavenly Father feeds them. Are you not of more value than they? Which of you by worrying can add one cubit to his stature? “So why do you worry about clothing? Consider the lilies of the field, how they grow: they neither toil nor spin; and yet I say to you that even Solomon in all his glory was not arrayed like one of these. Now if God so clothes the grass of the field, which today is, and tomorrow is thrown into the oven, will He not much more clothe you, O you of little faith? “Therefore do not worry, saying, ‘What shall we eat?’ or ‘What shall we drink?’ or ‘What shall we wear?’ ...For your heavenly Father knows that you need all these things. But seek first the kingdom of God and His righteousness, and all these things shall be added to you. Therefore do not worry about tomorrow, for tomorrow will worry about its own things....

Essentially, this passage of the Bible is telling us that there is no point to worrying. We can't add a day to our life by worrying, we actually can't change anything by worrying about it. And by worrying about our life, we're exerting little faith. Bottom line, when we worry, we're not trusting the Lord will take care of us. It sounds so simplistic, but it's been quite profound to me as of late.

I've always justified my worrying by assuming I was being "responsible". If I could plan out all the "next steps" in my mind.... play out the worst case scenario.... then I'd be prepared. Isn't the boy scout code something about 'always be prepared'? Well, that's how I saw worrying. I'm just preparing myself. Being a responsible _______ (fill in the blank - mother, wife, daughter, person, etc). But all I've been preparing myself for, is feeling so afraid of what might be coming down the road that I lose sight of the simple pleasures of the current day/moment. And all the while, displeasing the very God of grace Who has dealt so kindly to me.

I've spent the last couple of days purposefully NOT worrying. About anything. And I'll be honest, I've felt a little irresponsible - which is absurd! But, I have. If I'm not actively worrying about something, then I'm not prepared to handle it if/when "it" comes. But it's such backwards thinking, and directly opposite to the Lord's command. Do not worry. Do not worry about anything. Philippians 4:6 - Be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let your requests be made known to God.

So that's what I'm doing. When a worry tries to creep in. I pray and hand it over to the Lord. And continue the thought instead with how thankful I am for the things/people in my life. It's quite simple. And I'm doing the right thing by not letting worries cloud my mind... my life. And I gotta tell you, being this "irresponsible" never felt so good.

we have a winner!!

2009-01-11T07:23:00.002-05:00

Ladies and Gentlemen.... I have a very big announcement (well, kinda big - or maybe in the grand scheme of things, it's a relatively small announcement, but in my day to day world right now, it ranks up there with the likes of Kohl's having a 50% off sale on shoes!).... drum roll please.

I woke up this morning to a dry baby, a dry bed, and an extremely full diaper that did not leak! EUREKA!! My husband even got excited about this one! With all the commotion around Ethan's crib this morning, he probably thought it was Christmas morning all over again. Anyway, I'd like to once again thank you all for your insights and advice. For now, the Huggies Overnight diapers are doing the trick. However, I want you all to know that I am keeping each of the other ideas in my hip pocket should I need them down the road. AND... to add frosting to the cupcake, when my hubby did his routine coupon clipping from the Sunday paper, we found a delightful Huggies Overnight coupon. It's a sign. A beautiful, beautiful sign.

You should see the good mood I'm in this morning. And I haven't even had a diet dr. pepper yet. Wow. It's amazing what a dry crib and child will do for ya!

Before I go, though, to get ready for church... and on a much more serious note. Please join me in prayer for my sister's friend Lisa. Her 2 year old son Samuel was in the hospital this past week undergoing quite a few tests which eventually determined he has a diagnosis of osteomyelitis. It is a severe bone infection. He will be on antibiotics for the next several months, and is expected to make a full recovery, however, it's a situation in which I know she'd appreciate your prayers. Pray also that her son will take the medication. She mentioned that it's quite a struggle right now.

Bad things or sad things happening to children is so heartbreaking. I cringe at the thought of a child having to suffer emotionally or physically. But in a sea of questions, we know this answer...

"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".

Much love to you all!

well my goodness...

2009-01-08T19:39:00.003-05:00

Wow! You guys came out of the wood work on this one! Thank you so much for all the wonderful advice. I knew you were out there with your wealth of knowledge and information. And I must say, I've never been more thrilled to go diaper shopping in my life! Testing some of these wonderful theories is my project for this weekend. Oh, and I had just recently started pointing "it" down - which did help a little, but wasn't always fool proof... however, I think that partnering that tip with a good diapering regimen could produce victory!

I will let you know how it goes. Fingers crossed everyone!

p.s. - By the way, I enjoyed reading all your comments and emails. And some of you I've just "met" for the first time, which was fun for me. Oh, and I just have to say that I loved the calorie comment that said, after you consume a certain amount of calories in a 24 hour period, then your body just doesn't absorb anymore. Ah... Bliss!

Thanks again! You guys are the best.

calling all readers!

2009-01-08T09:23:00.004-05:00

Dear friends, I come to you today in need of either your own personal insight/experience or your I-heard-it-through-the-grapevine wisdom. Are you up for the challenge?? Good! Because if I have to change one more set of pajamas and bedding because my sweet little boy leaked (yes I mean tee-tee'd!!) right out of his diaper, overnight, to saturate everything within a 9 to 10 inch radius of his body, I'm going to buy stock in Tide laundry detergent.

He's currently in a size 3 diaper. So I bought size 4 for him to sleep in. Maybe I didn't buy the best brand? So... this is where you come in. What brand of diapers (particularly for overnight protection) do you use? What other suggestions do you have? Hmmm?

I know we all have tricks. We're either moms, or we've babysat, or we've got some sort of child care experience under our belts. So speak up! Share your knowledge. And while you're at it, splice in some tricks that get children to eat from something other than a bottle, with substance more than just formula/cereal. We have an occupational therapist coming next week to evaluate Ethan, since he's a candidate for early childhood intervention - and apparently they are going to show us how to teach Ethan to eat "big boy" foods - however, he's quite stubborn, so we'll see what happens. In the meantime, your hints and tips could be quite helpful.

So either email me (kasey_krawiec@yahoo.com), or leave a comment below.

Oh, and one last thing. If any of you happen to know the secret to making calories disappear from items such as cheesecake and french fries (without compromising the taste, of course), then it is highly important that you share this first and foremost.

more pictures!

2009-01-06T14:06:00.012-05:00

Just thought I'd add a few post-Christmas pictures for your viewing pleasure! They are all from my cell phone camera, so they aren't the best quality, but I have to take advantage of the moments when I can! Ethan's appointment on Monday went very well, by the way! His potassium and sodium levels have really responded to the new medicine and are both in a very stable position right now - praise the Lord! For the past four months, he's been seen weekly by both Boston Childrens and Connecticut Childrens (alternating weeks). However, due to how well he has been doing, he will now have a week off in between visits, soooo this means next week NO hospital visit. Wow.
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See, I've grown quite accustomed to these weekly visits and have found a sort of peace knowing that he was being watched so carefully every week, but soon these visits will become more and more spread out. And I'm quite sure my nerves will take a little bit of a beating during those moments of opportunity to be "normal", but, at the same time, it's all still a huge testament to the miracle our little boy is. His amazing health, after such a life-threatening diagnosis, is truly truly truly an example to all of us of the power, mercy and love of God.

Now, I know not all families get the miracle they are looking for. I indirectly meet such families often and my heart breaks each time. And I certainly do not have the wisdom needed to answer such "why" questions, in which I ask myself all of the time. But I believe there is a time for us to learn through loss - and through that loss, a time to encourage and love each other because some have traveled the same road. But I also believe there is a time for us to learn through blessing - an opportunity to have the chance of a personal & sweet taste of God's mercy.

Yet, in either case, He's the same loving God.

And foolish is the judgemental person who seeks to analyze why some miracles are given and some are not - why some prayers are answered in the way we hoped, and some are not. Because no family or person is any more or less deserving than another. The truth is, each one of us has been created by God for a particular purpose (His purpose!), to set out and (hopefully) accomplish in this life. Circumstances and situations are allowed to enter our lives to grow us... to change us... for the fulfillment of that calling. And I believe that in the most joyous of occasions, Jesus rejoices with us. And I honestly believe that in the most heart-breaking or disappointing of situations, Jesus is likewise broken with us. But the amazing reality is that in the broken times, He is ready to provide comfort, strength and peace. And He will. He does.

Phillippians 4:7 - And the peace of God, which surpasses all understanding, will guard your hearts and minds through Christ Jesus.

Hmmm.... I didn't even mean to go down this rabbit trail today. That being said, what's my point, you may be asking? I guess it's that regardless of the curve balls we encounter during our lifetime, at the end of it all, I have to believe what Scripture tells us in Romans 8:28 - the promise we can cling to - that all things work together for good to those who love God and are called according to His purpose...

update

2009-01-04T19:04:00.004-05:00

Ethan's potassium and sodium levels came back wonderful on Friday! We are soooo thankful to the Lord for that blessing! We go back tomorrow morning to have everything checked again and if all is well, he will not have to go back to the doctor until the 20th. It's truly miraculous how well he continues to do. Thank you from the bottom of our hearts for praying for our little boy.

We're still struggling with the eating, but I'm holding out hope...

Adam is doing much better as well. His surgeon mentioned last week that he should be a bit more aggressive with his physical therapy, which was a good indicator that he's healing well overall. He still lacks some movement and all the feeling in his index finger, but we know it will just take time.

I hope your new year has had a good start so far! I try not to put too much expectation into things (which can sometimes lead to my being a "glass half empty" kind of gal, but I'm working on it!), but regardless I always have the desire and the hope for things to be good, and the overall understanding that the Lord knows it all.

So...

I'm going to try to live in the moment this year. I often don't. Too busy looking ahead, or looking behind. But I'm learning that there is so much happening right now that is special, unique or even uneventfully lovely. And I want to absorb it all. Taking none of it for granted. Being grateful to God for all His gifts of blessings and His love. That has struck me lately. Taking nothing for granted. In my prayer last night I tearfully thanked God for the opportunity to be Adam's wife and Ethan's mom. And I begged for that opportunity to be continued one more day, one more week, one more month, one more year. And every night I intend to ask Him the same thing. I'm so thankful for my life and I'm not ready to miss out on any of it. I've been struggling with fears and worries about so many things.... my health, Adam's health, accidents, more unexpected trials that are hiding around the corner.... and the only way I know how to counteract those feelings is to be thankful for each day that happened to be perfectly normal. No need for glitz and glamour. Just splendidly normal is fine with me. And ya know, I've had a pretty bad headache all day, but I woke up today with another opportunity to be fully engaged as Adam's wife and Ethan's mom. And when I look at it that way, it was a wonderful day.

Seeking Him this year.

Thanking Him this year.

But seek first the kingdom of God

and His righteousness,

and all these things

shall be added to you.

Matthew 6:33

a year in review

2008-12-31T08:06:00.004-05:00

First, thank you for your prayers for us yesterday. We had safe travels and overall Ethan is doing extremely well! His potassium was high, and so we have to start him on a new medication to counteract that... which is tricky. It's a high volume of medicine, three times a day, and it has a very strong taste - grape salt water. Needless to say, Ethan is NOT a fan, and attempting to get this down his throat every day, 3 times a day, for the next few months is going to require God's grace - and advil for me. We go to the hospital on Friday to ensure his potassium level hasn't gotten any higher (pray it hasn't), because if it has, he will need an EKG to ensure that his heart is okay (high levels of potassium can affect your heart). But overall, like I said, he's doing fantastically well.

Which brings me to my post today...

Adam and I were talking the other night about the fact that for the first time in either of our lives, we can recall every inch of this year - 2008. That might sound strange, but if I look back on my life, I can remember certain "moments"... special days, or how a particular holiday was spent, a family vacation, an anniversary date, etc... but I can't honestly say that I can recall an entire year. For instance, the year I got my drivers license was 1995. I vaguely remember going to the DMV and I remember driving around town with an excited younger sister, but that's about it. 1995 - I don't remember much about it. Oh wait, that might have been the year my highschool cheerleading squad qualified and went to compete in the National Cheerleading Competition at Disney World in Florida. I mean, come on, for a small Christian school in Texas, that was a HUGE deal, and here I can't even remember exactly what year it took place! Well, what about my senior year of college? Sitting here now, I can't even remember what classes I took the semester I graduated! What about birthdays? There are some birthdays - even in recent years - that I can't remember how I celebrated them. Forgetful? Absent-minded? I don't think so... I think maybe it's more that in years past my focus wasn't nearly as concentrated as it has been this year.

But this year.... 2008.... I remember every day and month of it.

Looking back it seems like it went by so fast in a lot of ways, yet at the same time, I can easily re-live each day in slow motion.

We rang in the new year, this time last year (though I don't remember exactly what we did!), with me extremely ready to deliver the child who had decided to take up permanent residence on my sciatic nerve. Twenty-three days later, he was born. The adjustment period in the days that followed were so surreal and strange. All of a sudden there was this little baby boy, who only slept for 2 hours at a time (I do remember that) and I, Kasey Jean, was his mother.

Fast forward six weeks later to March - that's when I went back to work. Teaching my little kindergartners. Dropping Ethan off at my parents, stopping in to check on him during my lunch break... the whole routine. I remember all of it.

Then fast forward a mere 5 weeks to April 8th. I remember that day. The day. I remember dropping Ethan off at my parent's place just like I had done every day for the previous 5 weeks. And I remember thinking that he wasn't acting right but choosing not to worry. I remember checking in on him during lunch, just like I always had. He was still asleep from the time I dropped him off at 7:00 am and he hadn't eaten yet. I remember going back to work and not being able to concentrate. At 2:00 pm I was administering an Achievement Test for the 8th grade class and I felt an overwhelming urge to leave. A few minutes later, I did. I remember speeding to my parents, grabbing Ethan & taking him to the pediatrician. Crying the entire way, but not knowing why. I remember telling myself he had caught a cold. I remember calling Adam. I remember the pediatrician telling me to go down to the Children's Hospital for some routine blood work to see if he had caught a virus or something. I remember me waiting for Adam to leave work and go with me. I can't bring myself to write what all took place over the next 7 hours, but I remember.

All of it.

Especially the utter shock of hearing, "Leukemia cells are showing up in his blood work. The pediatric oncologist is coming in to see you, he should be here by 2:00 am. Right now, though, we'll need to go ahead and admit your son so we can begin the further diagnosing and treatment."

The weeks that followed.... there in the hospital room. I remember the obnoxious machines that would beep all night long. I still remember the code to the kitchen that patient/family had access to there on the floor. All of the unfavorable statistics, all the chemo, all the information, all the people, all the cards, all of the encouragement.... I can recall it all.

Fast forward again to August. After months of searching, a cord blood donor had been found. The temporary move to Boston (7 weeks to be exact), the radiation treatments, more chemo, more information, more encouragement and more cards/gifts.

Every thing. I remember.

Wow. These tears feel so fresh. Simply remembering - actually unable to forget - still feels like opening a wound. I can still feel now, exactly how I felt going through each step. The tears are still hot as they stream down my face. The tears are still vulnerable. The tears are still in awe.

Yes, I remember this year so well that my tears cannot be contained. But what I haven't yet mentioned is how well I remember the beauty.

A thriving little boy who overcame each obstacle put before him... one answered prayer after another.
The love and support of family.
The love and support of friends.
The love and support of strangers.
The days we were able to be at home in between initial chemo treatments.
Having the life changing opportunity to put faith into action.
Believing for a miracle in a way that actually changed my life.
Seeing the miracle look up at me every single morning - and all day long.
Seeing God work in ways that even my own guilt and fear couldn't stop.
Paying severe attention.... Seeing God. Feeling God. Knowing God.... a craving.... more than I ever had before.

Even in spite of our son being diagnosed with a rare form of leukemia (cancer!?) at only 11 weeks of life, I can't say that 2008 was an awful year, because how can you say that about a miracle. But I can certainly say it was unforgettable. In many, many ways.

I don't know what 2009 has in store. I will honestly say that I hope there's a bit more time and opportunity to enjoy life (aka: have fun!) as a family. But, if we are to learn from history, then I walk into 2009 tomorrow with the knowledge that my Lord is exactly Who He says He is... my son is in His powerful hands... so is Adam.... and so am I.

And if you know Him, then so are you.

Luke 1:45 "Blessed is she who believed, for there will be a fulfillment of those things which were told her from the Lord.”

2 Corinthians 9:15 "Thanks be to God for His indescribable gift!"

Thank You, Lord. You know the words in my heart... Thank You.

Happy New Year. And thank you... We cherish what you give and do for our family with your prayers and kindness. 2008 wouldn't have been the same without you.

road trip

2008-12-30T06:30:00.000-05:00

Ethan and I are heading to Boston this morning for his check-up. Join us in prayer (again) that his electrolytes (aka: sodium & potassium) remain in stable condition - or even better condition! And that the rest of his blood counts continue to look good! His rash hasn't been nearly as inflamed over the past week or so, and that's been a nice blessing. Thank you for your prayers for us today - especially for Ethan. We can't thank you enough!

p.s. - I feel a long post brewing.... I think that with 2008 quickly coming to an end there's a lot on my mind.... it will have to wait until tomorrow, though! I'm off to Massachusetts today.

Merry Christmas, Ethan!

2008-12-26T15:18:00.014-05:00

We had such a wonderful Christmas Day!

The Lord blessed us with so very much.

And Ethan got to enjoy both sets of grandparents

and all of his new toys!

All in all, I think little E made

out pretty good for his first Christmas...

and this doesn't include all the

fun clothes & books & DVD's he got!

Although, it is true - he was more thrilled

about pulling at the wrapping paper

(and putting it in his mouth)

than anything else!

Hope your day was just as special as it was for our family!

joy to the world!

2008-12-24T08:48:00.005-05:00

Joy to the world, the Lord is come!

Let earth receive her King;

Let every heart prepare Him room,

And heaven and nature sing,

And heaven, and heaven, and nature sing.

-------------------------------------

And she brought forth her firstborn Son,

and wrapped Him in swaddling cloths,

and laid Him in a manger,

because there was no room for them in the inn.

Now there were in the same country

shepherds living out in the fields,

keeping watch over their flock by night.

And behold, an angel of the Lord stood before them,

and the glory of the Lord shone around them,

and they were greatly afraid.

Then the angel said to them,

“Do not be afraid, for behold,

I bring you good tidings of great joy

which will be to all people.

For there is born to you this day

in the city of David a Savior,

who is Christ the Lord.

And this will be the sign to you:

You will find a Babe wrapped in swaddling cloths,

lying in a manger.” And suddenly there was with the angel

a multitude of the heavenly host praising God and saying:

“ Glory to God in the highest,

And on earth peace, goodwill toward men!"

Luke 2:7-14

---------------------------------------------

For God so loved the world, that he gave his only

begotten Son, that whosoever believeth

in him should not perish, but have everlasting life.

John 3:16

Merry Christmas!!

11 months

2008-12-23T08:23:00.004-05:00

Someone is 11 months old today... I'll give you one guess who! And thank you for your prayers for his appointment yesterday. Ethan's counts came back showing everything to be where it should be. His electrolytes (aka: sodium & potassium) still hovering around the borderline, but that's okay. They are still in the "safe zone" and that's all that matters. We're taking another new approach with his skin rash, so hopefully this new cream doesn't further irritate his skin. AND we're taking a different approach to get him to eat more solid foods. Right now, he's still fully on formula - however, not from a lack of trying from mommy! We practice "big boy" food every day, several times a day... he's just not interested (which is to say he screams and throws a fit until you give him a bottle). HOWEVER, we're trying to encourage more "self feeding" items which he seems to take to a little bit better, so I was encouraged yesterday with these new tactics. The doctors want him to be steadily growing/gaining weight and at this age formula alone won't cut it. But again, like I said... we try! Hopefully this approach of "independent" feeding will open his willingness (and his mouth!) towards a more variety of things to eat.

There's always more I could say, but I'll save it for Christmas! However, before I go, I'd like to once again thank anyone and everyone who has ever donated blood, platelets or organs. Lives are changed, lives are sustained, and lives are given another chance at living because of people who donate. Some of you may remember when Ethan was extremely dependent on blood transfusions and platelets just to survive another day. It's a daily miracle that's needed every single day by someone in this world. Our little man being one of those people. So thank you. And let me encourage everyone to give of yourself in this way. Donate blood. Every chance you get. Donate platelets. Give your personal stamp to someone else. I assure you that you'd not only be changing the one who receives it, but the lives of their loved ones.... because there's no words to describe how grateful we were that any time Ethan needed a transfusion of blood or platelets, there was always a supply in his blood type. How grateful we were.

How grateful we are.

prayer requests

2008-12-21T15:43:00.005-05:00

Tomorrow (Monday), Ethan and I will embark on our weekly trip to the hospital (this week it's our local hospital, not Boston) to see how well his counts/levels are doing. I have no reason to believe that his counts won't be excellent, however, it'd be foolish of me not to ask the Lord's blessing regardless. As you may remember, Ethan's potassium and sodium levels have been teetering on the brink of requiring a step of action (meaning a re-admission for a few days to get the levels back to normal and further investigate the root cause of the problem). In case you're curious, high levels of potassium can cause kidney failure and low levels of sodium can cause seizures, can affect nerve & muscle function, and can have affect blood pressure.

Ethan's numbers for each of these electrolytes are in need of a significant boost (in opposite directions!) in order to completely alleviate the very thought of there being an concern. SO with that said, I'd like you to pray once again that today his potassium level would be LOWER than it was last week and that his sodium level would be HIGHER than it was last week. And maybe a prayer that there'd be no other surprises pop up that would put us in the hospital, keeping us away from home over Christmas - or any other time for that matter :-)

Thank you for the blessing of your prayers for Ethan. If he knew how to say "thank you", I know he would! But, his mommy and daddy sure know how and we THANK YOU very, very much!

________________________

p.s. - A friend recently brought to my attention, another beautiful child in need of our prayers. Her family's website shows so much strength and dependence on the Lord... but I'm sure there are moments of weakness and fear mixed in as well. The young lady's name is Catie & she is struggling with a very rare brain tumor. I've added her website to my side bar on the lower right with the other children we've been praying for, but will add it here for you as well. http://catiesstory.com/

picture time

2008-12-19T08:27:00.005-05:00

I thought I'd post some new pics of our soon-to-be 11 month old (the day before Christmas Eve!) I can't believe we're nearly one month away from his 1st birthday!!

Whew... time flies!

In these pictures, you'll see that we were testing out his "big boy" car seat ... ya know, the "front-facing" seat. We think he likes it, but you be the judge (wink-wink).

Oh, and let this be your initial warning. With Ethan's first Christmas coming up next week, and his 1st birthday coming up in January... well, you can imagine all the pictures that will be posted, right!?

For we are His workmanship,

created in Christ Jesus for good works,

which God prepared beforehand

that we should walk in them. - Ephesians 2:10

time for an update on my boys again

2008-12-16T15:43:00.005-05:00

Thank you so much for your prayers over us. They are certainly being put to good use and I can't thank you enough for your kindness!

My hubby (Adam) is adjusting to life with one fully functioning arm. He's quite a trooper, himself... I see where Ethan gets it from. He has started physical therapy, and though it's painful, he knows that successful therapy will significantly decrease the chance he would need a second surgery. The primary damage is to his index finger, but obviously it has affected the use of his whole hand. He has to wear a fairly large splint, that covers his hand and his wrist, as added protection... but like I said, he's learning to adjust. Thank you for praying for his healing!

As for Ethan, his appointment in Boston yesterday was fairly uneventful - which is GREAT! That means that all of his blood counts and levels were good and we got to go home for another week! His electrolytes (potassium and sodium) are still hovering on the borderline, but they haven't crossed over into needing any action/intervention, so that's a blessing to my heart right now. His rash is still with us, however, my main concern was how it was irritating his eyes and I must tell you that almost instantly his eyes cleared up the day I asked you all to pray. Thank you, Lord!

I've actually decided to take a different outlook on this rash situation. It's annoying to me, but it doesn't appear to really bother our little man too much (now that his eyes are under control), and according to the doctor, this type of rash is extremely normal after an umbilical cord blood transplant. It can be mild to severe, but it's just his body accepting and getting used to the new cells. And when I think of it that way, I'm reminded of the on-going miracle at work inside Ethan's little body. So in an odd way, the rash is a visual aide to help me remember what is going on "behind the scenes"... and really, how precious it all is. I would still like the rash to go away, obviously, but while it's taking up residence on his sweet skin, anytime I feel annoyed at it or how often I have to put topical cream all over him, I'll instead think about what the rash means.... he has new blood flowing through his once cancer-filled body.... he's alive and strong.... his body is working.... God is working.

When I look at it that way, I've never seen more beautiful red patches in all my life.

I have a confession to make...

2008-12-14T22:15:00.000-05:00

No, there's no need to contact the authorities... it's not that kind of confession. But, one that needs to be stated, regardless. I've touched on bits and pieces of this before, but I've not gotten it all off my chest and really - for my own sake - I need to.

Before I get going, I put forth a disclaimer at this time: this post could be all over the place, so fasten your seat belt!

I've mentioned recently that I can be quite reflective. But, whatever it is I'm trying to focus on at that particular time can sometimes come and go as quickly as it takes for a red light to change to green, for a dry diaper to get wet again, or my seemingly content child to get disgruntle (which is sometimes only a matter of seconds)! My train of thought gets interrupted quite frequently in the course of a day. I'm sure most all people could say the same. Except when I'm here. Here, my attention is captured and I'm able to bring all the scattered pieces together, in one place, for me to think about, think about, and think about again. Here, I type and sit. Then type some more. Followed by more sitting, reflecting oh yeah, and thinking. All-the-while trying to "figure it out" as I go. Like a true quiet time for me.

This blog started (and still continues to be) as a giant prayer request for our then 11 week old son who, we were surprisingly told, had a rare infant leukemia. I clung (is that a word?) to my laptop those early days in the hospital last April, pouring out details that we'd learn each day, begging for any eyes reading the words to pray for Ethan's healing. And somewhere in the midst of the requests for prayer, I noticed the Lord morph Ethan's site into much more. It's still a place in which I come to you sweet hearts, asking for prayer over our family, but it's also now a place in which I come to wait and hear from the Lord. My words are only as strong as the truth He has given me. And I sit here tonight, truly amazed at how much He has spoken to my heart through this very site.

But that's not the confession.

The confession is that I've been ignoring a prominent problem in my life. Surrender. Not the type of surrender that would require me giving myself over to the enemy - such as it is in war or something - but surrender (or in my case, the lack thereof) of the "me" factor.

I've noticed it pop up occasionally in the course of my lifetime, however, the true confession is how terrible it has become as of late. ME. It's all about me. Obviously, this is not a pretty picture to paint of myself, but truth be told, it is the skeleton in my closet.

Shall I go on? Unfortunately, yes. Because if I don't do it now, I won't face the fact and deal with the problem... Ethan will need my attention, my favorite TV show will come on, or the phone will ring - anything will and has kept me from owning up to what I know God is asking me to confront. MYSELF.

Honestly, I don't even know how to describe what I'm talking about. So even now, I'm asking the Lord to help me process it all. Basically, I have been getting in the way of being able to have what I claim I know is available to me through God's grace. Peace. Strength. Faith (as opposed to Fear). Joy. Expectation. Anticipation. Hope. A beautiful Future with my Family.

Instead, lately my actions and reactions show that of one selfish, fearful, and "I give up" type of person. Maybe it's hard for another to notice it. Maybe it isn't. Maybe I'm really good at knowing when to smile and maybe I'm not. But whatever the facade, in the deep down darkness of it all, you would see a young woman desperately trying to hold on to whatever little bit of control she thinks she has left over her life and the lives of her son and husband... and you'd find her backed into a corner, with a Louisville Slugger in hand, waiting in a determined panic for Fear to come ask her to join him. And instead of swing the bat at him, she just stands there, buying into every last thing he says. It's not just Fear, though. She entertains Self-Pity, too. In fact, if you were looking closely, you'd see that Fear and Self-Pity looked very much alike. And together, they present a very convincing message:

Cancer has been known to relapse, ya know. We suggest you not get too comfortable. There's always a new trial lurking around the corner. Case in point, you've seen the rock of your family suffer an accident - next time it could be worse - for either of you. So, we wouldn't get our hopes up about enjoying life like you thought you would.

Imagine a much larger version of this diatribe and you can begin to understand how easy it has been to entertain such horrible mind games. There I've been content to be. And on top of that, living with such a selfish, selfish attitude. Being afraid and being so focused on how all of the events that have happened in our life over the past year have affected me - well, suffice it to say, it's not the best combination.

Which brings me back to the word - Surrender.

Whether I've made a decent point here in this post, or not. The root of my being so focused on myself, and so focused on the fearful "what ifs" is that fact that I've been extremely unwilling to fully surrender my life into the Hands of God. Not my eternal life. But my daily life. I've been so scared to "let go" because I've been so afraid of what else He might ask of me. Which leads me to think about all that I want from/out of my life that I've become extremely self-focused. If you get trapped in that train of thought, I assure you, it's a vicious cycle that is very hard to stop.

So... there you have it. Or better, there I have it. A call to surrender the "details". I could tell a fib and pretend that by the end of this post, I've successfully done it. "Thy Will be Done, Lord!" But, if the truth were to make its way from my typing fingers, it would reveal that though I've admitted the problem, I'm still in the stages of the struggle in correcting the problem.

Definition of Surrender: "To relinquish control... To submit or yield... To give over oneself into the power of another."

Oh the details.... the wish lists.... the nervous prayers.... they are all there. He sees and hears every last one. I know He's trustworthy. I know He is. The question is, am I'm willling to let go of what I think is best for my life, my future, my "right now" and fully & finally give Him my willingness.... myself?

quick update

2008-12-11T06:00:00.001-05:00

Ethan's appointment went well on Tuesday. He had to get a shot - which he didn't like - but it's a preventative step against pneumonia and such, so it was good for him. His sodium is borderline too low, and his potassium is border line too high... meaning they are still in the "safe zone" (thankfully!), but are close to a slight dip in the wrong direction. Pray that they each get back to their respective & "appropriate" levels.

And one quick thing, can you pray fervently with me today about this rash on Ethan's face? It's starting to become very red and inflamed around his eyes (upper and lower eye lids) and he's rubbing them all the time - making it worse. Pray with me today that the irritation around his eyes specifically would go away even this very day.

Adam goes back to see the hand doctor tomorrow to have his cast removed and to have an assessment since his surgery last week. He's been quite uncomfortable. Pray God's blessing over his hand and the appointment.

Thank you so much for taking the time to pray for us. I'm so honored that you do.

lady in waiting

2008-12-08T20:38:00.005-05:00

I assume it's only natural, given the circumstances we've encountered this year, but in the rare quiet moments I find, I notice that I am quite reflective. My personality is a bit reflective anyway, but lately, even more so. I'm forever looking for the reasons to things. Believing, as I do, that all things enter our lives for a reason, when something strange, difficult, or even earth-shattering happens, I'm looking around - and up - for the reason. What's the purpose of ______ happening to me? What's the lesson to learn here? What is so necessary that such a thing needed to happen to get my attention, mold my life, etc.

However, with this mindset, I tend to over-analyze things as well. Why did I just stub my toe? What was the purpose of me forgetting my wallet at home? As my husband has tried to convince me many times, not every thing that happens in a typical day has a life-changing meaning. True. But, there have been enough life-changing moments in this year alone, that cause me to constantly wonder.... the reason, the purpose, the lesson.

Looking back on my life as a child, a teenager, high school, college, post-college - there's really nothing that I can focus on that has been as lengthy a trial as most of 2008 has been. Sure, I've had embarrassing moments. One of the most embarrassing being when I was a freshman in high school, having just made the Varsity Cheerleading squad. It was Friday. Pep Rally day. We needed two more chairs for the football players to sit in as the principal announced them into the gym to start the "show". I grab the two needed chairs (not the fold up kind - very sturdy chairs), and seeing that our principal was about to welcome everyone to the rally, I run across the gym - from one end to the other - with one mildly heavy chair in each hand. About 1/2 way across the gym floor, I trip. The chair in my right hand goes flying across the gym floor. The chair in my left hand is what tripped me, and I fall directly on to it, its four legs up in the air, and my body perfectly in between them... and sliding across the floor I go. I eventually stop and I just lay there. Nothing hurt except my ego. Did I mention that my skirt was completely raised up and I'm laying face down... so my rear end is posing for all the camera flashes that immediately took place (thank goodness bloomers were a part of the uniform!) Our principal comes over to me (with the microphone) and asks me if I need help getting up.... to which I say "I'd like to stay here". I was so embarrassed that I didn't even want to get up and face the crowd, the football team, or my fellow cheerleaders. Eventually I did, and the whole "the show must go on" took over the rest of the excruciatingly long 40 minute pep rally.... but I was mortified. Come on! That's rough stuff to a 15 year old girl!

And then a few years down the road, of course it's easy to remember relationship drama. The inevitable heartbreak. The kind you don't think you'll ever be able to bounce back from. The kind that makes you remember that STRESSED spelled backwards is DESSERTS!? This scenario has made it's way into my life twice - both in different ways - but neither any less painful to experience, but.... who's counting.... the third time is the charm, right? Right! Adam and I are certainly a match made in Heaven.

And sprinkled throughout the rest of the years, there's the unusual memories of being disappointed by something or someone, being rejected, getting into a fight with a friend over something silly, feeling lost the first day of school, having a problem at work, your car won't start the day of an important exam/interview, and so on.... I can think of a hundred things that have interrupted my "flow" at any given time in my life.

However, this year it's all so different.

The trial hasn't been minor. It hasn't been a result of something I said or did.... or the result of something someone did or said to me. It's not a situation in which I can say "well, this will be old news next week". It's not something I can pretend didn't happen, or ignore until it goes away. I can't reason my way out of it. And I can't do anything to change its existence in my (our) life (lives).

It's a trial of acceptance that I've really never known before - at least not to this degree. Yet, even still, I know that the reason, the purpose and the lesson are more important and needful than I've ever known before. I've not been brought into full understanding yet, and I've also not been brought into a time of full restoration yet.... but I know they are coming. I don't know when the Lord will choose to reveal Himself to me/us in those ways, but I still believe that He will.

I've had a great life. Disappointments, yes. Junk to deal with, yes. Sadness, yes. But the seasons were always quite short. In hindsight, revitalizing change or blessing was always relatively quickly around the corner. But this... this has been a season of waiting. And the waiting has been long. Don't misunderstand, the blessing has been miraculous, but the whole story still continues. How will it unfold? I don't know. But I know we're still being ask to wait. Ethan has been fully protected. I'm in awe of God's power and faithfulness over him. But in the midst of such a miracle, I must say that there has also been pieces of our lives broken in the process. Hear my heart though, I'm overly satisfied (and grateful, and amazed, and blown away, and humbled, and excited, and the list goes on!) with the miracle of my son's chance and ability at daily life. But, deep inside, I know there's more. It's just that we're being asked to wait. Wait on Him. And trust Him along the way. So... I'm waiting. Trusting. For the rest of His rescuing to come. Things have not been easy, but.... I know that He knows. Lately it seems like I do not know much else, but at least I do know that.

He knows.

-

winter is here

2008-12-07T20:59:00.005-05:00

We had our first snow here in Connecticut today! Ethan got a kick out of looking at all things "winter white". I thought I'd post a few pics of him in his Boston Red Sox winter hat, that he had to wear on our outing to the hospital last Friday. When I was trying to put it on him, he thought it was a game and kept pulling it off!

We had a nice quiet weekend. Ethan's personality is coming out more and more... especially when he doesn't get his way. And Adam was unfortunately quite uncomfortable due to his hand still recovering from surgery. He goes for a follow-up visit on Friday, and hopefully the full cast he is in can be removed and replaced with a smaller splint. If you know my husband, you know that it's a bit difficult for him to lay around all day. He's the personality that must be doing something at all times. So this necessary "time out" is proving a bit challenging for him. We appreciate your continued prayers for his overall healing and swift recovery! Oh, and yes, I did get the Christmas decor up... finally.

My heart is full of things to share, but my eyes are extremely heavy. I do believe it's time for bed. Oh, Ethan's regular "Monday" appointment, got moved to Tuesday. Be in prayer that all is well during that check up AND that they can come up with a new strategy for this persistent rash all over his face & head.

I greatly appreciate you....

God be merciful to us and bless us,

and cause His face to shine upon us,

that Your way may be known on earth,

Your salvation among all nations.

Let the peoples praise You, O God;

let all the peoples praise You.

Psalm 67:1-3

good news

2008-12-05T16:55:00.003-05:00

Late last night... very late. As I was trying to fall asleep, I just found myself give in. If it was necessary for Ethan to have to spend the weekend in the hospital, then so be it. We'd make it work. And ultimately, I want him healthy. So I took him in late this morning, not having any idea whether or not we'd be back up there later tonight for his admission. I went on with our day, knowing that regardless, God would work out the details. But of course, secretly hoping that the low sodium number was simply a mistake. I didn't want there to be another issue with Ethan's overall health that would spark further questions and tests over the next couple of weeks. This horrible rash is enough for now. And.... within a couple of hours of his nurse taking Ethan's blood this morning, we got the phone call with the results.

It was in fact a fluke! His sodium showed to be normal today and his potassium even went down another point from yesterday - which is more good news. I was so relieved. So very relieved.

All I've been repeating to myself this afternoon is... when God's people pray...

Thank you for being one of those people. God continues to use you to minister to our family and He continues to provide beautiful answers to our prayers.

Adam is recovering somewhat comfortably.... Ethan is a feisty 10 1/2 month old.... and we all get a (hopefully) quiet weekend at home - together.

Who knows... maybe I'll even get Christmas decorations up.

thank you for praying

2008-12-04T20:34:00.003-05:00

Adam's surgery went well. It took quite a bit longer than we were initially expecting, but that's because when the surgeon opened up his hand (from the stitches the ER set for him last week) he noticed that Adam had indeed cut the tendon running through his index finger, in addition to a major nerve. The tendon and nerve were able to be repaired, but the artery couldn't be fixed - but we already knew that. Thankfully there are two arteries in your index finger, and he only cut one. Because if he had cut both, he'd have lost the finger. So when the doctor said that, I really didn't have a comment, other than, "oh..." (long pause) "okay"..... (long pause) "uh that's a decent amount of perspective, huh". (not my finest moment in adult conversation, but what can I say... I was a bit stunned and thankful that stupid pickle jar didn't slice open both of those arteries! Anyway, back to the point. So the surgery went well. He did say that the way the tendon was injured, Adam will need quite a bit of physical therapy to help it heal correctly. Another surgery may be necessary down the road if his mobility doesn't regain itself completely, but we're going to pray against that needing to happen, (right?)! Adam was in quite a deal of pain when they moved him into recovery, so we were there for a couple of hours as they tried to get his pain level down. He's much more comfortable now, however, it's a different story when those pain meds wear off. All in all, he's doing well. He wanted me to tell you all a big THANK YOU for your prayers for him today. He certainly felt them...

As for Ethan.... well, I'm very happy (and thankful!) to report that his potassium level did in fact go down! We need this to continue over the next several weeks, but it's a blessing to me that it went down since Monday. But.... (don't you hate it when there's a but?!?) his sodium level also showed a very low number - which is not good. Low sodium can indicate kidney problems and cause seizures. I have to take him back up to the hospital tomorrow (Friday) to have his blood work re-done to ensure it wasn't an error from the lab. Since the number is much lower than usual, they are hoping it's just a fluke and that the re-test will show it to be fine (pray that it's a fluke!). However, (don't you hate howevers?!?!) if his sodium is in fact that low, he will have to be admitted for IV fluids and to have tests run to see what causing the sodium deficiency.

Needless to say, this probability did not make me happy. Spending the weekend in the hospital with Ethan, while Adam is at home alone still recovering from a pretty intense surgery... *sigh*... well, doesn't it make sense that I just want to stay home. Of course. I do. And I can't tell you how much anxiety there is at the thought/reality that at any given moment, for any given reason Ethan could be admitted again. I want so much for all of this to be behind us. To focus on Ethan being a little boy and concentrate on his development, milestones, growth. But unfortunately, most of his life, those things have had to take the back seat to a disease that I don't even feel like typing out right now. And yes, don't get me wrong, he has done AMAZINGLY and MIRACULOUSLY well (thank you, Jesus!). And I'm so thankful I could cry! But right now, I'm just an emotionally worn out chick who feels like feeling sorry for herself. Who is letting the thoughts of all that's been taken away from her (being a first time mom & wanting to experience certain things) get the best of her... instead of focusing on all that she's been given.

But don't worry... I've already told the Lord I'm sorry for my attitude.

today's the day

2008-12-04T06:43:00.000-05:00

Please say a prayer for my hubby's hand surgery today. He has to check in at 10:00 this morning, and the surgery starts at noon. We're told the surgery should last about an hour and he should be able to go home shortly thereafter. As I've mentioned before, the surgeon won't know the full scope of damage until the surgery begins, so please continue to pray that there are no surprises and that the surgery can be done easily & the recovery, quickly.

Ethan will be having his potassium level checked today - at the same hospital, around the same time - so please also pray that the level has not hit the "danger zone". I pray it's either gone down, or at least stayed the same as it was on Monday.

My heart & mind have been back and forth this past week, somewhere between faith and fear. Not about any one thing in particular, but all of a sudden, about everything. There's a lesson in the midst of all of this for me, and truthfully, I'm hesitant to want to learn it. I actually have much more to say about this, but with the hustle and bustle that today brings, I feel it best suited that I save those thoughts for another day. I guess the bottom line is that I'm really struggling. And it's much more than Adam's injury, or Ethan's on-going monitoring. I'm being forced to examine and accept things that make me uncomfortable - at least, initially. That un-settle me. And I don't necessarily like it. But I know it's necessary. Because if the old Vacation Bible School song is true, then "He's still workin' on me, to make me what I ought to be".... and in all honesty, I know that He is. But I feel my need for "control" being asked of me. Among other things. And if you want to know a secret, I'm having a very difficult time with it all.

Pray for my boys today. I can't thank you enough.

update on my boys

2008-12-01T20:17:00.006-05:00

Thank you all for praying for our little family.

I'll start with the hubby.

Adam's appointment with the surgeon went well. The doctor did a basic analysis of Adam's hand/finger movements and Adam seemed to have responded well. He will be having surgery this Thursday in an effort to repair the nerve damage (not much can be done about the severed artery). The doc seemed to think that Adam would be able to have almost all of his function & feeling back in his hand - which is great news. We're not sure what his actual recovery will look like at this point, though. The doctor will know more when he's able to look inside the wound during the surgery on Thursday. Please be in prayer that he finds no "surprises" during the procedure and that the surgery is successful, with no complications. My mom will be able to stay with Ethan so that I can go with Adam to his outpatient surgery. Be in prayer that nothing crazy randomly pops up with Ethan that would keep me from being able to do this.

Now for the baby.

Ethan's appointment in Boston went well. His fluctuating low-grade fever seems to have subsided for now. We're assuming teething to be the culprit, but it doesn't matter the cause if the temp gets up to 100.4 he has to go to the ER for antibiotics regardless. Thankfully, this didn't have to happen over the weekend. All of his blood work showed an increase in number which is great and overall he's doing well. The rash is thought to be a result of his body still in the "accepting phase" of the donor cord blood. The prayer is obviously that it goes away, but also that it doesn't get any worse. His face and head are quite covered with these little red bumps and blotchy red patches. There is one area of concern right now that's more important than the rest. Ethan's potassium level is quite high. If potassium in your body hits dangerous levels it can cause problems and damage to certain organs, etc. He's about 2 points shy of hitting that level so your prayers for this would mean a lot to me. The assumption is that his new antibiotic is causing the problem, so we're doing a "test" this week to see if the theory is correct. Pray that we find the cause of the elevation and that we can get it back under control without much problem. Other than that, our little trooper is doing very well.

And for the mommy?

Well, to say that I wish there were no more curve balls in our life for a long while, would be an understatement. I won't lie. Even though there is significant amounts of good in our lives, there is still so much of this that is, at times, difficult to endure. The daily care Ethan requires for his transplant recovery can be quite taxing. I can find myself frustrated & exhausted at the routines & restrictions that no family would like to know as well as we do. I have moments where all I want to do is scream. I have moments when all I want to do is cry. And then I have moments where I realize there's so much I am thankful for. I could go on, but I imagine I'd just be saying the same thing over and over. The bottom line for me is that unfortunately I've been made intimately aware that disease, freak accidents, things you'd never invite to be a part of your ideal "life" - are unfortunately possible. And there's a fear that lurks into your being when you've been exposed to those things that leave you asking "what's next", assuming (like only fear can do to you) that there's "worse" waiting for you around the corner. It's a dangerous mindset to let yourself sink into. It's a deep pit. And though it's easy to trip and fall into it, thankfully (thankfully!), there's a Ladder. He is the Ladder. God Himself. And He makes a way for you to escape the pit of fear, no matter how many times you fall into it. And lately, I've been falling into it quite a lot. But by His grace, He never lets me stay there for long. My self-pity, my paralyzing worry, my scared mind - stops - just long enough for me to hear Him say,

"My grace is sufficient for you..."

prayer, please

2008-12-01T05:00:00.004-05:00

Just a quick reminder to ask for your continued prayers - especially today. Adam has an appointment this afternoon with the hand surgeon to find out the details of his injury (in case you didn't see the post below, Adam cut open his hand, from his index finger down to his thumb - down to the bone and cut an artery and a myriad of nerves on Thanksgiving morning... neither his hand or his arm are functional right now). Pray the doctor is thorough and wise in his assessment of Adam's recovery and "next steps". Pray for quick & easy healing of his hand! We're very thankful the wound remained stable with the 18 stiches, over the weekend. Please also be in prayer for me and Ethan's visit to Boston today. Ethan has struggled with a low-grade fever all weekend (leaving me worried that I'd be having to take him to the ER at any given moment!) and his now month-long rash continues to spread in random places over his face/head/abdomen/arms/legs. He's also been refusing to take his necessary "by mouth" meds lately, making things quite difficult.

And... if you have any prayers left... say a prayer for my sanity.

unhappy thanksgiving

2008-11-28T16:58:00.005-05:00

Just a few short hours after my thanksgiving post (below), we had a major accident happen in our little family. My husband was trying to open a jar of pickles when all of a sudden the glass shattered and sliced his hand wide open. I'd never seen anything like it before in real life. The cut was quite deep and he needed a trip to the Emergency Room right away. This all took place around 10:00 Thanksgiving day morning. His parents were able to stay with him in the ER until I could get my parents situated to take care of Ethan and then I was able to go up there to the hospital and be with him. He ended up cutting one of the arteries in his hand and the laceration went all the way down to the bone. The laceration goes from the end of his index finger all the way down to his thumb. The initial ER doctor thought that the artery had clotted itself, so he didn't want to tamper with it until a hand surgeon could take a look at it - however, no hand surgeons are available until Monday. So he did a light stitching to keep the wound/skin closed and sent us on our way back home around 3:00 that afternoon. Within an hour of us being home, the wound ruptured again and Adam was bleeding profusely.

Back to the ER we had to go.

They took out the stitches and decided to tie off some of the veins that were bleeding and ended up re-stitching him in a much more detailed fashion. We were finally able to go back home around 8:30 that night. Needless to say, it was not a fun day. And my poor husband... he's on quite a heavy dose of pain medications and his left hand/arm is not at all functional at this point. So he's not able to do a lot of basic things right now. He has an appointment with a hand surgeon Monday afternoon, however, I will be going to Boston for Ethan's follow up appointment. His parents will be able to take him (he's not allowed to drive right now) and I'm very sad I won't be able to be with him.

Please pray that the appointment goes well and that the doctor will be thorough and have wisdom for next steps. We're not sure the severity of the damage or how long the recovery will be, or whether or not he will need surgery to repair the artery, etc. Please also pray for Adam's pain to decrease over the next several days and that God's favor and blessing would be with Adam's overall healing. The immediate prayer need is that the wound remains stable over the weekend until he is seen by the specialist on Monday.

Things are a bit challenging for us right now, as he's not able to help with Ethan (pick him up, hold him, feed him, change diapers, etc.) and he's not able to do some basic things for himself or around the house. He's in good spirits, but he's very anxious to see what lies ahead in the coming weeks/months after talking to the specialist on Monday. We would greatly appreciate your prayers over this situation, in addition to Ethan's on-going needs (rash still on his face & slightly worse today).

Thank you in advance for your prayers.... we appreciate them and you.

Trusting the Lord... day by day.

Ethan's Journey: Living Proof of God's Unending Miracle

We've Moved!

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

1 of 2

PLEASE PRAY!!

Jesus loves the little children of the world!

We're Back!

*updated* doctor's appointment & randomness

mr. tuxedo

singing praises!!!

unfeigned faith

if you wouldn't mind...

always

please pray!

pictures first, then the commentary...

cleansing

an update to this morning's post

faith

happy mother's day

just.... give me a minute

doctor appointment today

a borrowed thought & an ethan update

reflecting

good times

since it's nap time...

alana update

prayer request - alana feliciano

got this excerpt from a friend via email

easter

a day of rejoicing

wonderful news!

headed to boston today

perfect peace

*update* urgent prayer & praise!

too much

simple, but sweet

love your life

visit details

pre-rash pics & some misc thoughts

update

prayer request

scripture

well... it's never simple...

boston, rescheduled

prayer request

peace

cell phone cameras sure are handy....

eventful couple of days...

hip hip hooray!

central line update

let's move on... shall we?

happy valentine's day!

a crossroad

make a way

2 corinthians 12:9

ethan update

he did it! he did it!

hmmmm....

party time!

happy birthday, sweet baby boy

both appointments went well...

hi there

oops

happy friday

back to basics

we have a winner!!

well my goodness...

calling all readers!

more pictures!

update

a year in review

road trip

Merry Christmas, Ethan!

joy to the world!

11 months

prayer requests

picture time

time for an update on my boys again

I have a confession to make...

quick update

updated doctor's appointment & randomness

update urgent prayer & praise!