reflecting

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

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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.

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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.

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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.

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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.

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by erin o'donnell

since it's nap time...

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

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

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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

"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

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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.

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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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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.

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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

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This is the day the LORD has made;

we will rejoice and be glad in it.

Psalm 118:24

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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.

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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!

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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.

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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.

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Ethan's Journey.

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Our Journey.

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God continually revealing Himself.

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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!

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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!

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

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

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.

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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.

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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.

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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.

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(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.

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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!

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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.

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

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

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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.

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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.

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

love your life

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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

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

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.

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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

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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

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

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

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.