Thursday, April 30, 2009

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.

Wednesday, April 22, 2009

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

Monday, April 20, 2009

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

Sunday, April 19, 2009

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...

Wednesday, April 15, 2009

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.

Monday, April 13, 2009

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.

Wednesday, April 8, 2009

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.

Tuesday, April 7, 2009

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!

Monday, April 6, 2009

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.

Thursday, April 2, 2009

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