Tuesday, September 30, 2008

in other words...

Excerpt from Streams in the Desert, Charles Cowman, September 30th...

"When God puts a burden upon you He puts His own arm underneath."

There is a little plant, small and stunted, growing under the shade of a broad-spreading oak; and this little plant values the shade which covers it, and greatly does it esteem the quiet rest which its noble friend affords. But a blessing is designed for this little plant. Once upon a time there comes along the woodman, and with his sharp axe he fells the oak. The plant weeps and cries, "My shelter is departed; every rough wind will blow upon me, and every storm will seek to uproot me!" "No, no," saith the angel of that flower; "now will the sun get at thee; now will the shower fall on thee in more copious abundance than before; now thy stunted form shall spring up into loveliness, and thy flower, which could never have expanded itself to perfection shall now laugh in the sunshine, and men shall say, 'How greatly hath that plant increased! How glorious hath become its beauty, through the removal of that which was its shade and its delight!'"

See you not, then, that God may take away your comforts and your privileges, to make you the better Christians? Why, the Lord always trains His soldiers, not by letting them lie on feather-beds, but by turning them out, and using them to forced marches and hard service. He makes them ford through streams, and swim through rivers, and climb mountains, and walk many a long march with heavy knapsacks of sorrow on their backs. This is the way in which He makes them soldiers--not by dressing them up in fine uniforms, to swagger at the barrack gates, and to be fine gentlemen in the eyes of the loungers in the park.

God knows that soldiers are only to be made in battle; they are not to be grown in peaceful times. We may grow the stuff of which soldiers are made; but warriors are really educated by the smell of powder, in the midst of whizzing bullets and roaring cannonades, not in soft and peaceful times. Well, Christian, may not this account for it all? Is not thy Lord bringing out thy graces and making them grow? Is He not developing in you the qualities of the soldier by throwing you into the heat of battle, and should you not use every appliance to come off conqueror? -- Spurgeon.


Thank you for praying for mine and Ethan's trip to Boston yesterday. It took 3 hours - after hitting morning rush hour traffic - but we made it safe and sound. The appointment went well and no transfusions were needed so we were able to head back home around 12:30... which was nice... no traffic heading back home at that time of day! He and I will go back on Thursday and we expect he will at least need some red blood cells transfused... but he's gone almost 2 weeks without needed an extra dose of them, so that's a blessing. He is being weaned off his steroids and anti-fungal medication over the next several weeks. Please be in prayer that any GVHD (graft-versus-host-disease) would not increase in his body as a result of the decrease in medications. And as always, pray against any fever or infection. Thank you so much.... I've not felt much like myself these last few days.... too much to explain without sounding like I'm feeling sorry for myself.... but I want you to know that I'm thankful you're here with me.

Sunday, September 28, 2008

i am weak but he is strong

Bright and early tomorrow morning (Monday), Ethan and I will head out to Boston for his routine outpatient visit. Hopefully this visit will go just as "routine" as the last 2 visits have been. I do have to acknowledge to you how amazing it is how normal he looks and acts... he behaves just like I would assume a healthy boy his age would act. He's very playful, very charming, and gets bored easily!

We're still adjusting - correction - I am still adjusting... and trying to balance everything that I need to do for him with everything I want to do with him. While at the same time trying not to lose my sanity or peace of mind. Things aren't always easy or ideal, but I guess I don't really know them any other way, so I just keep going. It's easy to lose joy though, or at least it's hard not let the "acceptance" of where your life is, rob you of "enjoying" where your life is. That's been a particular struggle for me as of late.

I know.
I accept.
And I am busy "doing" it.

But... it's there... an aching desire... that I don't always allow to surface to the top of my being for fear that I will lose focus for the task at hand... but it's here with me tonight... a hope of some sort... and it is heavy on me now... a pleading and physical cry out to the Lord... that there would be something... something to make me see a glimpse of the brighter days ahead. Because, sometimes the clouds are so thick and heavy, I feel like I'm choking... and I'm ready for the sunlight to burn away their presence.... at least long enough for us to get out and enjoy the relief from their gloom.

So I will restore to you the years that
the swarming locust has eaten...
You shall eat in plenty and be satisfied,
and praise the name of the LORD your God,
Who has dealt wondrously with you... .
(Joel 2:25-26)

Friday, September 26, 2008

gentle leading

It's hard to believe that it was only one week ago today that we were preparing to be discharged from Boston Childrens Hospital. I'm amazed that it has only been a week! Adam has been home with me and Ethan since last Friday (he took this week off) and we've been able to do so much together and around the house.... making way for our growing little boy! And having to go back to Boston twice this week (Monday and yesterday) proved to be quite simple overall - even if it does require leaving the house at 6:45 in the morning and getting back between 4:00 and 5:00 in the evening. It has just been so refreshing to be home and allow Ethan various playful opportunities and experiences that he couldn't have in the hospital.

I do have to be honest, though. My mood has fluctuated quite a bit these past few days. There have been moments of irritability and other moments of frustration... and I've managed to go all week without a single, meaningful, quiet moment with the Lord... but I'm praying for a change in all of that. I won't bore you with the list of excuses that have been in my way, but I will ask that you pray for me as I settle into a personal routine that allows me the time I need to focus on further becoming the woman and mother God would have me to be. I don't want anything lost in all we've had to endure as I get back to a somewhat normal home life... I'm not sure if that makes sense, but in a way, being at the hospital off and on over the past many months has left me feeling like I know what the Lord would have me do while we are there... while being back at home leaves me feeling unsure of what to do in some ways. Though I desperately want to be at home and not at the hospital!

Oh goodness, I should stop this rambling before my thoughts loop back around again and I attempt to say the exact same thing, but in a worse way than I already have! Before I go, though, I have some additional pictures of Ethan and his week at home. Look at those chubby cheeks! Hopefully he can be weaned off the steroids soon! He's becoming more active each day and I'm so thankful for that. Each appointment we've had this week has gone very well. Please pray they continue to do so. Please also pray for me as next week I will be taking Ethan to Boston on Monday and Thursday by myself as Adam goes back to work. There's a lot that is involved in these appointments (mostly the time it takes) and I need the Lord's help to ensure everything runs smoothly.

Isaiah 40:11 - He will feed His flock like a shepherd; He will gather the lambs with His arm, and carry them in His bosom, and gently lead those who are with young.

Wednesday, September 24, 2008

there's a song in my heart

I sang and signed (sign language) this hymn at my high school graduation. I remember choosing it because I felt it symbolic to the trust I was trying to exercise as I went into the next chapter in my life - college! - and all the uncertainty back then with decisions that needed to be made. Ten years later, and embarking on yet another chapter in my life, this song still holds a special place in my heart... and is even more meaningful to me.

Tis so sweet to trust in Jesus,
And to take Him at His Word;
Just to rest upon His promise,
And to know, “Thus says the Lord!”

Jesus, Jesus, how I trust Him!
How I’ve proved Him o’er and o’er
Jesus, Jesus, precious Jesus!
O for grace to trust Him more!

O how sweet to trust in Jesus,
Just to trust His cleansing blood;
And in simple faith to plunge me
’Neath the healing, cleansing flood!

Jesus, Jesus, how I trust Him!
How I’ve proved Him o’er and o’er
Jesus, Jesus, precious Jesus!
O for grace to trust Him more!

Yes, ’tis sweet to trust in Jesus,
Just from sin and self to cease;
Just from Jesus simply taking
Life and rest, and joy and peace.
Jesus, Jesus, how I trust Him!
How I’ve proved Him o’er and o’er
Jesus, Jesus, precious Jesus!
O for grace to trust Him more!

I’m so glad I learned to trust Thee,
Precious Jesus, Savior, Friend;
And I know that Thou art with me,
Wilt be with me to the end.
Oh for grace, Lord, to trust you more...

Tuesday, September 23, 2008

happy 8 months, sweet ethan...

I cannot believe Ethan is 8 months old today. All day I've been thinking about the day he was born. It is still surreal to me that I'm a mom. This little boy is mine. It's amazing to attempt to fully comprehend what all has happened in these past 8 months of all our lives. Actually, going back a little further, it's odd to think that this time last year I was pregnant with him! My pregnancy was not the most enjoyable... and well, my delivery wasn't either... I still suffer from a cracked tailbone that has yet to completely heal! But out of it all came this little 7 pound 10 ounce boy who was immediately handed to me just seconds after he was born at 5:10 in the evening on January 23, 2008. I remember looking at him, not at all sure I was ready for everything that was about to change in our lives. I remember when he first started to cry - man, he had some lungs! It was my first time to try to comfort this little baby... my little baby.
It was just so surreal.
When we brought him home, I was amazed at how we just knew how to care for him... but I also remember how nervous I was, that first night. He would breathe so loudly in his sleep that I was certain something was wrong! I didn't sleep much that night at all. But then again, those days/weeks didn't allow for much sleep anyway! I don't mean to ramble on, but I've just thought so much about Ethan's life today.
I'm so proud of him.
It's strange, though at times, because I've had to be his nurse for a long time now - more than half of his life at this point - and so focused on certain aspects of his treatment/medications and following particular regimens on and off over the last several months, that I struggle with feeling inadequate some days about the "regular" mom stuff... the fun milestones and knowing when to introduce certain things into his life, but I know we'll get there. And really, overall... I am still in awe and amazed that I get to be his mom.

Happy 8 months, Ethan! What an amazing life you've lived so far, baby boy. I know you don't know how special you are, but I write this... all of this, for months now... so that one day you will know. You will be able to read for yourself that by the divine grace of God, you not only endured a very rare leukemia with such strength, but you have been given a beautiful miracle from your Heavenly Father. A miracle in which your daddy and I, and many other people, got to witness first hand. Through your life, many have been touched... many have been changed... and you haven't even said your first word yet! But your life has spoken volumes. I also want you to know that right before your transplant, I found these verses in the Bible and at that moment, I dedicated them to you and it is my prayer to the Lord, for you and your life.

Psalm 121:5-8
[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.

Monday, September 22, 2008

catching up...

What a busy couple of days! But... it's been so good. Where do I begin....
Well, got home Friday evening to a wonderful surprise of balloons and a "welcome home" banner (thanks to our sweet friends Mike and Carrie) positioned perfectly outside our front door and on our porch. What a fun way to arrive at home, as a family, for the first time in a long time. Friday night went well. Ethan was not at all used to his surroundings. He seemed confused as he looked around the living room and the kitchen... and not quite settled into his "new" environment, but we got through it... and we all had a very good night of sleep!

Saturday I got to run some errands - which was terrific! Driving around, being busy doing things that weren't hospital related. Adam stayed home with Ethan and did a great job of giving him his afternoon medications, which enabled me to just get out for a while (he is such a great dad, by the way!). Ethan still wasn't quite used to being home and all the additional stimuli. But we got through the day, and tried to make him as comfortable as possible.

Sunday morning my sweetheart made my favorite breakfast and surprised me with an hour long massage appointment later in that afternoon (have I mentioned yet how terrific he is??). He even stayed home with Ethan that night so that I could go to church again after being away for so long. I have to say, there is something very sweet about the fellowship of other believers. Ethan was extra tired this day. Not extremely active, but instead wanting to be cuddled and rest. It is either a result of his recovery process or the fact that his two lower teeth are wanting to pop through... or a combination of both. But never a fever and never any other area of concern. He took his medicines very well, AND the shots I have to give him in the leg have been a breeze (thank you for praying!).
We had an appointment today back in Boston for our little man's first outpatient visit at the Dana-Farber/Jimmy Fund Clinic. We had to wake Ethan up at 5:30 this morning to get him fed and ready for our 2 hour drive. He is soooo good in the car. He either plays with his toys or sleeps! Since he can't be in "public", as soon as we got to the clinic they took us back to a room. They drew his blood and we waiting to see what the results would be. And praise the Lord, because so far everything looks good. He did NOT need a transfusion of red cells, which is wonderful! And everything else looked good except that he needed a transfusion of platelets, which in the scope of all there is to be "worried" about, a simple transfusion of platelets was very relieving! All in all, we were there at the clinic for about 5 hours - not including the 2 hour drive up there, and the 2 hour drive back (these appointments take a very long time... for various reasons), but we at the end of it all, we got to come back home - so it's all worth it!

Our next appointment in Boston is on Thursday. I'd appreciate your continued prayers against Ethan getting any infection, fever or severe signs of GVHD. If the future appointments go as easy as it did today, it would be a huge blessing.

Oh, and speaking of the Jimmy Fund Clinic, the Jimmy Fund Walk, that you so generously donated towards, was yesterday. I'm so thrilled to announce that $3,325 was raised in honor of Ethan's Journey. I'm at a loss for words in trying to express our gratitude for your generosity. As you know, we were discharged to go home on Friday and Ethan can't be around anyone other than myself and Adam, so unfortunately weren't able to have anyone come to the house and stay with him, therefore Adam and I weren't able to participate in the walk this year. We initially thought Ethan would still be in the hospital, making it easier for us to get away for a couple of hours. Have no fear, though! My parents were ready and willing to step in and take our place with their own walking shoes! My mom was able to represent me and walk in my place and my dad was able to represent Adam and walk in his place. They even arranged for Ethan's name to be broadcast over the loud speaker twice! It was such a great day and they did us proud with their excitement and involvement in all the festivities. Thank YOU for helping to make such a special day possible. I can't wait to see all the pictures, but in the mean time, they sent us a couple of shots they took at the registration tent. Adam and I cannot wait to go next year!

All things considered, this has been a very nice couple of days. I have much more to say, but my husband's ready to eat! So I'll be in touch again tomorrow.... I still greatly covet your prayers as we continue to get adjusted to our "new normal", and for Ethan's recovery. Thank you for being so kind to us...

Friday, September 19, 2008

a time to rebuild

Well, the day has finally arrived.... we are going home. There's been so much to do that I've not really processed that as of this evening, I will be back in my own home... with my hubby and our son. I am excited, but I think I'm more relieved than anything to finally have this portion of Ethan's journey behind us. There was so much we didn't know 5 months ago when he was first diagnosed with leukemia. There was so much we didn't know 7 weeks ago when we came to Boston for his cord blood (aka: bone marrow) transplant. And truth be told, there is so much we don't know about our immediate future. But one thing I do know... and I know it with all of my heart... God knows. He knew 5 months ago when I took Ethan to the doctor thinking he had a cold. He knew later that night when they told us it was leukemia. He knew who would be the best match for Ethan's transplant, even if it wasn't the best factual match (he received a 4 out of 6 match, which isn't great, but was the closest they could find for him). He knew how long Ethan and I would have to stay in Boston. He knew that His protection would be with our son every step of the way. And.... what brings tears to my eyes the most.... He knows. He knows the desires of my heart. He knows the plans He has for me. He knows the plans He has for Adam. He knows the plans He has for Ethan. And they are fully of goodness and mercy. I don't know that I've ever seen the Hand of God work so distinctly as I have with my son. And I reckon that the magnitude of everything He has done has yet to fully sink into my comprehension. I know that the next several weeks, months leading up to this next year of our lives may not be easy... but I also know that day by day it will get easier... and before we know it... life will be more than we could have ever imagined. How do I know? Because I know my Lord. And I know He loves me.

Jesus loves me, this I know.... for the Bible tells me so.
Little ones to Him belong, they are weak but He is strong.
Yes, Jesus loves me
Yes, Jesus loves me
Yes, Jesus loves me
The Bible tells me so.

I leave you with a few prayer requests if you don't mind? Adam and I will be bringing Ethan back to Boston on Monday for his first outpatient visit.

  • Please be in prayer that his dependency on blood and platelet transfusions will decrease and that if they are necessary, that we will be able to handle that portion of his care at our home hospital.
  • Please also pray that Ethan remains fever-free. He has two teeth on the bottom that are going to poke through ANY MINUTE, and I understand that babies get teething fevers sometimes. However, ANY fever means an automatic hospital re-admission for at least 48 hours. They've taken good care of Ethan here in Boston, but I do not want to have to come back and be re-admitted!
  • Please also pray that all goes well with his medications I have to give him at home. He will have to take about 5 or 6 medicines by mouth, several times a day AND I will have to give him a shot in his leg daily until his counts get a little higher. I'm not nervous about any of it, I just want him to respond well to everything and not throw up, etc.
  • And of course, we want him to remain free of infection/sickness as his immune system takes its time to rebuild itself. By the way, his counts are 1,820 today.
Thank you for your prayers.... I'm sure we will need them as we get re-adjusted to home life all over again. Oh yeah, one last thing... I read this in my devotion this morning, from Streams in the Desert, and thought it fitting to share with you as well.
"My Father is the husbandman" (John 15:1)
"It is comforting to think of trouble, in whatever form it may come to, us, as a heavenly messenger, bringing us something from God. In its earthly aspect it may seem hurtful, even destructive; but in its spiritual out-working it yields blessing. Many of the richest blessings which have come down to us from the past are the fruit of sorrow or pain. We should never forget that redemption, the world's greatest blessing, is the fruit of the world's greatest sorrow. In every time of sharp pruning, when the knife is deep and the pain is sore, it is an unspeakable comfort to read, "My Father is the husbandman."
Doctor Vincent tells of being in a great hothouse where luscious clusters of grapes were hanging on every side. The owner said, "When my new gardener came, he said he would have nothing to do with these vines unless he could cut them clean down to the stalk; and he did, and we had no grapes for two years, but this is the result." There is rich suggestiveness in this interpretation of the pruning process, as we apply it to the Christian life. Pruning seems to be destroying the vine, the gardener appears to be cutting it all away; but he looks on into the future and knows that the final outcome will be the enrichment of its life and greater abundance of fruit. There are blessings we can never have unless we are ready to pay the price of pain. There is no way to reach them save through suffering. - Dr. Miller.
"I walked a mile with Pleasure,
She chattered all the way;
But left me none the wiser
For all she had to say.
I walked a mile with Sorrow,
And ne'er a word said she;
But, oh, the things I learned from her
When sorrow walked with me."

Thursday, September 18, 2008

oil in my lamp

I woke up around 4:30 this morning with a terrible headache. Thankfully, Ethan was still asleep. I was praying that God would take the pain away because I had so much to do today as we prepare to leave tomorrow. I had medicine I could take, but I have to take it with food, so I just laid in bed debating on what to do. Slowly, I began to also feel sick to my stomach. I thought, oh no! Please don't let me throw up on top of everything else! Then I REALLY won't be able to handle today like I need to. Of course, by this time, Ethan's nurse has come in to draw blood from his central line. This wakes him up, so I have no choice but to get up and take care of him. As I get up, I grab the medicine, a diet dr. pepper (yes, I do have a slight addiction), and some graham crackers and I ask the Lord one last time to give me strength to get past how yucky I felt. I choke down a graham cracker, feeling sick to my stomach the whole time, then went on to take my headache medicine. Ethan took some formula then went back to sleep. I was tempted to do the same, but I knew if I didn't get a grip on the day, it would get the best of me. So, I took a shower then walked across the street to get an Egg McMuffin (yes, food does often motivate me!).

I started feeling better as I began on my walk. During those few moments, I saw parents coming in and out of the hospital with their children. Some with minor problems, some with major. And I couldn't help the tears that began to swell up in my eyes. Since, I already looked ridiculous walking across the street with wet hair on a chilly morning, I didn't want to give anyone any additional reason to look my way, so I tried to hold back my tears as best I could. But the truth is, seeing all the hustle & bustle around me - all the parents, family members, sick children and their siblings - caused me to get outside of myself and understand something that tends to be so easy for me to forget lately... I am not alone. Yes, I have a wonderful support system of friends (you!) and family and I have a husband that blesses my life in more ways than I deserve, but even still, it's so easy to get consumed with what's on my plate that I tend to lose sight of the truth that God is with me. God is for me. God has blessed me. It was all I could do to stop there in the middle of the street and apologize to my Lord for being ungrateful... for losing sight of the bigger picture. His picture.

On my way back to the hospital, a song that I haven't even thought of in years, all of a sudden came to my mind. I remember learning it at Vacation Bible School when I was a little girl. I'll share the lyrics of one of the verses with you... the verse that I kept singing over and over in my mind...

Give me oil in my lamp, keep me burning
Give me oil in my lamp, I pray
Give me oil in my lamp, keep me burning
Keep me burning 'til the break of day
Sing hosanna, sing hosanna
Sing hosanna to the King of Kings
Sing hosanna, sing hosanna
Sing hosanna to the King of Kings

I don't believe it to be coincidence that this old children's Bible song came to my mind. My thoughts immediately went into prayer.

Give me oil in my lamp, Lord. Keep me burning... burning through the weak moments, burning through the pain, burning through tired times... give me Oil in my lamp and keep me burning for You... until Your work is done.

My headache isn't gone, but it's a dulled, more do-able, pain right now. But even with the ache in my head, I'm feeling revived. Slightly, but revived nonetheless. We've been in this trial, this testing of our faith, for more than 5 months now. The past 7 weeks being possibly the hardest in many ways, but also the best in others. Ethan has done miraculously well with each and every step of this process. I've mentioned before, that every side effect and problem we were told to expect, never.... NEVER.... happened. He was never in pain, never had to suffer more than a few minutes. Never lost his appetite. He was never "not himself".

And tomorrow, we get to take him home.

It's hard to even see the keyboard right now.... I'm crying tears of thankfulness to the Lord for ALL He has done. I do not deserve the grace, mercy and blessing He has abundantly given to us as our son has had to endure cancer and the necessary treatments to cure him. But that's the uncomprehendable beauty of Christ... we don't deserve anything from Him, but He gives and gives and gives. Again... and again... and again. None of this was supposed to be easy, and my own struggles aside, I have to honestly say this has been very easy for Ethan overall. And that's really all I wanted.

I'm overcome as I take it all in.

His counts yesterday were 1,080 and today they are 1,680. We are surely going home tomorrow. And though we will have to be back up here on Monday for a clinic visit, and possibly also next Wednesday and Friday... and even more times in the coming weeks/months, I'm hopeful that the worst is behind us and remembering that He who began a good work will not stop now.

Give me oil in my lamp... keep me burning for You, Lord... 'til the break of day. Thank You for burning the midnight oils for me, over and over.

Wednesday, September 17, 2008

Everything continues to move along for us to go home Friday afternoon. Ethan is doing very well, but please pray for me today....

I am physically and emotionally drained.

Tuesday, September 16, 2008

looks like we are going home

Ethan's blood counts are at 900 today! That makes 3 days in a row that his ANC level was above 500, so we are able to be discharged on Friday! It still hasn't fully settled in that we will actually be leaving in 3 days.... after being away from Adam day in and day out during the week, being away from the comforts of home and all my normal routines for SEVEN WEEKS... well, needless to say, I am ready.

As it stands right now, as long as Ethan doesn't spike a fever or need daily blood transfusions, we will be able to bypass the Ronald McDonald House and go directly home on Friday. I am thrilled about that! We will return to Boston on Monday morning for Ethan's outpatient clinic visit, and that will continue a couple of times a week (only about a 2 hour drive), until his care is fully transitioned back to Connecticut Childrens Hospital. I don't mind the drive if it means we can be back home as a family.

Please be in prayer for this transition as there will be many adjustments we will face over the next few days, weeks and months. Please be in prayer for Ethan as we will need to keep a watchful eye over him and his health as his immune system continues to heal and rebuild itself over this next year. There are a million small things I could ask you to pray for, but it may be best to sum it up by asking you to join me in asking that the Lord would continue His favor and protection over Ethan's body.

I'm a bit reclusive and quiet today. Maybe just trying to process everything. But I want you to know that your prayers and encouragement have gotten me through some hard days over the past 5 months. Your prayers have penetrated Heaven's gates and God has honored your plea(s) on our behalf. You will never know how much you have blessed mine, Adam's and especially, Ethan's life. I thank you so much for walking with us this long, and I'd be honored if you'd keep going. Our journey is not yet finished. There is still a long road ahead... potential trials regarding Ethan's health in other ways... but overall, I pray cancer would not have permission to re-enter Ethan's life. Ever.

Thank You for redemption, Lord. Thank You for restoration.

Monday, September 15, 2008

just a side note

I wanted to let you know that the lovely Hollie, who designed my blog layout, created a matching prayer "button" that you can add to your blog if you so desire. You can copy the code in the box below and add it to your site's sidebar. Once it is on your sidebar you can click the button and it will redirect you to Ethan's site for updates.

Another sweet soul created a prayer button for Ethan several weeks ago, however I seem to have misplaced the 'copy and paste' of that one, I had once saved. Each of these gestures and all the kindness many of you continue to shower upon us has blessed me/us in ways I could never fully express. I'm so thankful to God for each of you and the thoughtfulness you extend to us on a regular basis. I also want to mention that I am a bit behind in my emails! So if you sent me a prayer request and haven't heard back from me yet, please know that I did receive it and I have read it... I just haven't had a chance to fully respond to every one like I want to. But know that I'm praying and that you will hear from me soon!

I also wanted to say a quick "thank you" to Becky. Ethan loves his BUBS!
In addition to Becky, several of you wonderful ladies have sent us handmade blankets and shawls. I must tell you all that I absolutely love them! Several of the nurses here in Boston have also admired your handiwork! Thank you for not only taking the time to send us these wonderful gifts, but for taking the time to handmake such lovely items specifically for Ethan and mommy.

could it be this week??

Over the weekend Ethan's counts dropped down to 260 from 310, BUT yesterday they shot up to 650! That was his first time to hit over 500... soooooo, that started the official count down. If he were able to maintain an ANC count of 500 or more for 3 days in a row, we are then able to be discharged and continue Ethan's care and recovery via outpatient visits. Needless to say, I was curious as to what his counts would be today, and they are at 520! Still good! Because they are still above 500. So that's TWO days down, and one more to go! If his counts tomorrow are 500 or more (and he remains infection and fever-free) then I believe we will be discharged on Friday (they only do discharges on Friday).

I'm of course excited, but I'm also not putting all my eggs in one basket. I'm resigned to the Lord's will and if that means we are discharged this week then Woo Hoo! But if his counts dropped to 400 tomorrow, then that's okay too... it just means there's a little bit more of God's purpose that He hasn't quite finished yet. Either way, Ethan's new cells are engrafting and we are closer (much closer) to being able to go home.

Be in prayer about a few things for me, if you don't mind. I see them as slightly critical prayers right now, as we make preparations for discharge.

1. Please pray that Ethan remains fever-free... indefinitely would be fantastic! But at least fever free for these next couple of weeks until his care is fully transitioned back to Childrens Hospital in Connecticut.

2. Please pray for healing of Ethan's rash. He is still scratching himself quite a bit, all over his body. The attempts at controlling the rash with various meds, etc. have not been effective. Please pray for his discomfort.

3. Pray against a chronic form of GVHD from entering into his body.

4. Pray for full engraftment of his new cells, and that he remains in remission!

5. Pray for wisdom to those who make the decision about the medicines that will stop, and the meds that will continue, and for how long....

6. Pray against ANY type of infection as though we will be able to be discharged, his immune system will take about a year to rebuild and be fully functional again. He's susceptible to any type of virus at any time, and it could be quite dangerous for him.

(also be in prayer for safety for my husband, Adam, as he is traveling
on business - flying out today and returning on Wednesday)

I was thinking overnight about a promise I made to the Lord. I didn't make the promise in return for a "favor" from Him, but more a personal commitment that I would not forget all that He has done in Ethan's life and that I would tell of His wonders.

( This was the day I made this personal commitment/promise to the Lord.... http://ethankrawiec.blogspot.com/2008/07/hello-rubber-my-name-is-road.html )

Anyway, last night into this morning, I was thinking about the Old Testament story in the Bible describing when the Israelites set up a memorial (made up of 12 stones) to serve as a reminder to them and their children of all that God had done for them (see Joshua 4). To ensure they never forgot the miracles and wonders He had done in their lives as they moved into the Promise Land. I was thinking about how applicable such a memorial would be in my own life. On a side note, it the irony was not lost on me that their memorial consisted of 12 stones, representing the 12 tribes of Israel... and Ethan had 12 initial donor matches, and his actual transplant took place on the 12th. Interesting??

But, back to what I was saying...

I have been thinking of what the Lord would have me do to mark this Spiritual Journey we've had to walk through. And then it hit me.... Ethan's very life. His first steps. His first words. His first day of school. His first t-ball game. His first jr. high basketball game. The day he gets his driver's license. His highschool graduation. The first day of college. The day he brings that first "special" girl home for the holidays. The day he exchanges vows with her. The day he tells us they are expecting a child of their own, despite the radiation treatments he received during his cancer treatments many years before. That. All of that. Is and will be the testimony, the on-going reminder of all that God has done. I'm crying just thinking about it. What better memorial than that?

Ethan, your life will always be the picture of God's handiwork and power. And every milestone you encounter. Every set back that you overcome. Every limitation that you exceed. I will know. Your dad will know. And we will tell you that it's God's love, protection, mercy, power and favor that has graciously given you... life... abundant life.

I encourage you to find your own visual memorial. Something that you can't help but stumble upon in years to come, that will cause you to pause and remember a particular miracle God did in your life and His goodness in your life. Big ones, small ones. He gives graciously. Let us not forget.

Friday, September 12, 2008


I can't say it enough.... thank you so much for praying for our Ethan. He's doing well, overall, but he's starting to feel a little yucky as his new cells are starting to engraft. They say this is normal for each transplant patient. The body is working overtime as these new cells begin to take shape in a new body, and sometimes it takes a little toll on the patient. Flu-like symptoms (body aches, excessive fatigue, slight irritability) and a general "I don't feel good" type of attitude is what we can expect over the next several days. Please pray that in the midst of this, Ethan can remain comfortable and rested.

Pray also for this new approach we are taking with his rash. It's so sad to see his little fingers scratching his neck and arms & know he is so uncomfortable. It's been determined through some trial and error that he has a combination of a yeast rash and a GVHD rash. So over the next couple of days they are going to increase his steroid dose (to treat the GVHD) and increase his anti-fungal medication dose (to treat the yeast). Please pray this change in his treatment does the trick! Also, pray that he doesn't have to remain dependent on the steroids as they have made him a bit more "swollen" in the face and more plump all over.

I am so thankful to the Lord that He took care of me last night. I had a migraine attack hit me in a fierce way last night. Adam had took the day off yesterday to spend time with me and Ethan, thankfully he was able to take care of Ethan in the evening before going back to the hotel so that I could rest. He stayed until Ethan fell asleep, and was so sweet to ask the nurse to be extra attentive to Ethan because I was asleep as a result of a migraine attack. Well, Ethan slept for 8 hours in a row!!! Which happens when we are at home, but NEVER HAPPENS when we are in the hospital. And when he woke up at 4:00 this morning, the nurse took over and fed him and played with him, allowing me more rest. It was so wonderful and I was able to get over the migraine attack without having too much to handle as far as Ethan goes. Thank you for that blessing, Lord!

I'm learning that there is still sweetness in the Lord when He doesn't remove the problem or situation from you, because He faithfully stands by you and provides for you even in the midst of it. Depend on Him for everything. Every thing. "It" might not go away, but neither does He.

p.s. - Ethan's blood count/ANC dropped slightly to 310 today. But that's okay, because we're still truckin' along...

Thursday, September 11, 2008

Ethan's counts are at 400 today!!

I should most certainly be sleeping, since it's 4:44 in the morning.... HOWEVER, Ethan woke up about an hour ago wanting to eat and during that time, his nurse came in to hook him up for a blood transfusion... she told me the excellent news that his ANC counts are up to 400 today! (they draw and test his blood every night around midnight). I couldn't believe they made such a jump in one day! Monday they were at 130. Tuesday they were at 120. Yesterday they were at 180. And today, 400!

I was just too excited to go back to sleep until I posted the wonderful news!

They are very careful to explain that the numbers can fluctuate from day to day, and to not be discouraged if he falls back down a little. His little cells are just adjusting and growing and it's a process before they are stabilized. That's why they do not let you go home until the counts are 500 or more for 3 days in a row. I'm just so happy (and relieved) to see this new life starting to grow inside of him.

As for his rash....

They are convinced that the rash he has developed is associated with Graft-versus-host-disease. This is extremely normal, and even expected.... but no less itchy or uncomfortable for Ethan. It tends to be a good sign when transplant patients show indications of GVHD within the first 100 days after transplant, because it's likely that it will only be an acute case and not turn into a chronic problem (GVHD that develops after 100 days can tend to be more problematic, long-term and life-threatening). And they remind us that a little GVHD is a good thing. It shows that the body is reacting to the new cells.

Right now, the GVHD is only surfacing in the form of a rash. We need prayer that it does not start affecting Ethan internally... as this "disease" can take on many different forms and can cause many complications. Specifically, we do not want GVHD showing up in his lungs, liver or intestines. And overall not turn so serious/complicated that Ethan's body starts to reject the newly engrafted donor cells.

Thank you for your help in praying for our specific needs. I continue to be blown away at the Lord's goodness to us through answered prayer... and I know Ethan could not have done so well up to this point without you pleading on our behalf. I do not at all take the kindness you've shown in that way to us and our son lightly. My heart is full of thanksgiving to you for your prayers and to the Lord for His gracious mercy...

Psalm 23
The LORD is my shepherd; I shall not want.
He maketh me to lie down in green pastures:
he leadeth me beside the still waters.
He restoreth my soul: he leadeth me
in the paths of righteousness for his name's sake.
Yea, though I walk through the valley of the shadow of death,
I will fear no evil: for thou art with me;
thy rod and thy staff they comfort me.
Thou preparest a table before me in the presence of mine enemies:
thou anointest my head with oil; my cup runneth over.
Surely, goodness and mercy shall follow me all the days of my life:
and I will dwell in the house of the LORD forever.

Wednesday, September 10, 2008

prayer needed today *update*

I won't delete what I posted below a little over an hour ago, but I do want to make an update. I still need your prayer for Ethan's rash and his discomfort, but the update is my change in attitude. A brief conversation with a sweet and honest friend this morning reminded me that though my moods may change - my God doesn't. I am BEYOND ready to be back home, but I can honestly say that I don't want anything that is outside of the Lord's plan and purpose. I'd rather be in the midst of the storm with Him, than in the comforts of sun and breeze without Him. So we're still here, and that's okay. It's been 6 weeks, and that's okay. He's answered every prayer. Every single one. And I'm reminded this morning how wonderful He's been.
  • I didn't want Ethan's spleen to have to be removed - it wasn't.
  • I asked that he'd not get painful side effects and sores - he didn't.
  • I didn't want him to have to have a feeding tube - he hasn't.
  • I didn't want him to need to go to ICU for any part of the transplant or recovery - he hasn't.
  • I asked for the time/the weeks to go by fast - they have.

And the list truly goes on and on....

And I know the answered prayers will continue.

  • I'm asking that Ethan's rash go away - I know it will.
  • I've asked that we be able to go home soon - I know we will.
  • I've asked for healing and protection in Ethan's body - I know it's being done.
  • I've asked for restoration - I know it's coming.


  • I've asked for a miracle.... I know it's happening.
previous post earlier this morning:

Well... the bad mood of Tuesday, now goes by the name, the bad mood of Wednesday. But I'm too tired to go into detail as to why. Other than to say I feel like the walls in this hospital room are starting to close in on me. But I digress... my purpose of getting online this morning was simply ask a favor of you....

Please be in prayer for Ethan today. He has a rash that's been brewing for several days, but it's now more "full blown". They aren't sure the cause of the rash, and believe that there are 2 separate rashes from 2 separate things. Maybe a reaction to one of his medications, maybe a yeast rash, maybe signs of graft-versus-host-disease.... but one thing is for sure.... it's very itchy for Ethan. He rubs his feet together extremely fast or rubs them on me or the bed to try and get relief. He scratches his legs and his neck all the time. Ointments and lotions that we've tried have not been working. Benadryl helps a little, but he can only get that every 6 hours. Needless to say, this discomfort greatly affected his ability to settle and sleep last night.... as well as mine. I hate to see him struggling for relief, so please pray that we can get a handle on what's causing the rash so that we can know how to treat it... mainly so he's not so uncomfortable. Everything we've tried so far has not been working.

Tuesday, September 9, 2008

praise the lord and do not disturb

Do you ever have times in your life in which you wish you could put up a "Do Not Disturb" sign? I feel as though I have reached an imperative point in my need for sanity, in which a sign such as this is necessary. Granted, I know that while in the hospital, all the nurses and assistants have to do their job, and it's all in the name of taking care of Ethan. However, there is a grouch simmering right below the surface of this "smiling" face that wants to shout - DO NOT DISTURB!

It's 8:30 at night, Ethan is extremely restless because of the new rash that has developed on his arms and legs. I finally (and I do mean finally) get him to calm down and fall asleep... I lay him in his hospital crib. Not 30 seconds later, someone has opened the door to our room (which has a sign that indicates that Ethan is sleeping) and proceeds to change the large noisy trash bag out of the large noisy trash can.... Ethan wakes up. My cycle of getting him calmed again, starts over. Insert here an extra 1 1/2 of work for mommy. And the worse part... the trash can wasn't even that full.

Do not disturb.

It's midnight, Ethan has been asleep for about 2 hours. It's now time for vital signs (blood pressure and temperature check). The side rails of the crib go up and down - however without a certain finesse, they are quite noisy. One side rail goes down... then up... then down. Then the other side.... up... then down.... then up.... then down. And while Ethan can sometimes sleep through his vital signs, the continuous raising and lowering of said side rails (why all of this was necessary, I don't know) has now startled him. He's awake. For an hour.

Do not disturb.

It's 5:45 in the morning. Again with the side rails. What is going on?! In the 6 weeks we've been here, this has never been an annoyance before.... at least not to this degree. He wakes up. Again, for an hour.

Do not disturb.

As I lay him back in bed, somewhere around 7 this morning, the inner grouch in full grouch-mood... I find, next to where I lay Ethan's sleeping body, a small cap off of one of the syringes of saline that is used to draw his blood (from his central line). This is the 4th time this has happened in the 6 weeks we've been here. There is even a large sign on his bed that advises the nursing staff to be extremely careful about what they "leave" in Ethan's bed... because EVERYTHING GOES IN HIS MOUTH. Needless to say, anger ensued. The grouch wanted to run out into the hall throwing the tantrum of the century about how unacceptable it is for pediatric nurses to be so careless as to leave cheerio-sized plastic caps in my baby's bed (for the fourth time in as many weeks!), that he'd surely find, then put in his mouth, then choke!


After much debate within myself, I decided to wait until the shift change later in the morning, to discuss what happened. That's when the nursing manager and other higher-ups that I'd need to talk to would be clocking in. So I tucked that plastic cap under my pillow and went back to sleep until 9:00. And I'm overall better for the extra dose of sleep, and was able to be a bit more diplomatic (though only slightly, I'm still a mom ya know!) in my discussion about the choking hazard.

Ah, yes... the concept of Do Not Disturb... my son.... my sleep.... my life! Sounds extremely appealing to me today.

But there is a silver-lining to my bad mood today. AND IT'S BIG!

Ethan's counts have started coming in! We found out yesterday that his counts (ANC) were at 130 and today they are at 120 (it's understood that they will fluctuate slightly from day to day). Tears of joy covered my face when the nurse came to share the news yesterday. It is starting to happen.... we are so excited. We can go home once the numbers hit 500 for more than 3 days in a row and he remains fever-free. Thank You, thank You, than You Lord!!

And thank you for praying for this specific area!

Sunday, September 7, 2008

three things

I wanted to share my devotional entry from today. Again, it's from Streams in the Desert, by Mrs. Charles E. Cowman and it is as follows:

"God is our refuge and strength, a very present help in trouble" (Ps. 46:1).
The question often comes, "Why didn't He help me sooner?" It is not His order. He must first adjust you to the trouble and cause you to learn your lesson from it. His promise is, "I will be with him in trouble; I will deliver him and honor him." He must be with you in the trouble first all day and all night. Then He will take you out of it. This will not come till you have stopped being restless and fretful about it and become calm and quiet. Then He will say, "It is enough." God uses trouble to teach His children precious lessons. They are intended to educate us. When their good work is done, a glorious recompense will come to us through them. There is a sweet joy and a real value in them. He does not regard them as difficulties but as opportunities. -- Selected.
We once heard a simple old man say something that we have never forgotten: "When God tests you, it is a good time for you to test Him by putting His promises to the proof, and claiming from Him just as much as your trials have rendered necessary." There are two ways of getting out of a trial. One is to simply try to get rid of the trial, and be thankful when it is over. The other is to recognize the trial as a challenge from God to claim a larger blessing than we have ever had, and to hail it with delight as an opportunity of obtaining a larger measure of Divine grace. Thus even the adversary becomes an auxiliary, and the things that seem to be against us turn out to be for the furtherance of our way. Surely, this is to be more than conquerors through Him who loved us. -- A. B. Simpson
Second, I have an update on little Kevelyn. The foster baby of the Feliciano family that I have mentioned here before. She's the little toddler that is in need of both an intestine and liver transplant. However, the update is that she has still not been added to the transplant lists because paperwork from Mt Sinai Hospital and DCF (since as a foster child, she is still under the state's care) are still not completed. Keep in mind that Hope and Cesar are at the same time trying to adopt this little girl. She had to endure some unexpected complications over the weekend, resulting in another surgery to replace her central line. Pray for this adorable little girl's situation, but please also pray for strength & peace to the Feliciano family as they have 3 older children in high school and college, and two younger children under the age of 6, not including little Kevelyn.
And though each of these mentions could easily stand on their own for a days post, I wanted to also share something with you that has weighed heavily on my heart as of late. So... my final entry for today goes something like this...
I have long kept a prayer journal. Ever since I can remember, I've kept a journal of my prayers, prayer requests, poems or anything that I was feeling/thinking. Always with the intention that it was my private conversation with God. I guess this blog has taken over as my "prayer journal" right now, however, not quite as private. Though, I don't mind. I've always considered my life a sort of open book to some degree. If I've gone through something that could help someone else, then so be it. And then how thankful that makes me feel for having had to go through whatever it was I went through (say that 5 times real fast!). And at this particular time, I feel as though the Lord would have me share this journey with you anyway, so you're all invited in to read this ongoing prayer journal of mine. However, I do miss my old-fashioned journal. The actual "writing". Pen and paper reflections. But it doesn't make sense to me to re-write in a journal the same things I've written here... who has time for something like that anyway. And I don't enjoy redundancy. But, it has been on my mind to start another journal and I've felt very strongly that this particular journal (it's right here next to me, a sweet gift from a sweet group of ladies) should be about YOU. You've been so kind to take each of our prayer requests and add them into your prayer lives and I would be honored if you'd allow me the same opportunity.
So, this is your assignment. Email me. Email me as often as you'd like....with your own prayer requests and prayer needs. Nothing is too small (aka: my son needs new shoes for school and we can't afford them, I lost my cell phone and it has all my information in it, etc.) and nothing is too big (aka: I lost my job a month ago and if I don't get a new job by tomorrow, I will lose my house... etc.). And please don't be tempted to think that because of the situation we are in, your situation or need is any less important or valid. It all matters. And whatever is on your plate that seems difficult or impossible or anywhere in between... pray. And let me pray for you. Please. I have many pages in this journal over here that I'd love to fill up with your names and needs... and then you can let me know when that need was met and I'll go back and thank the Lord with you for the answer! And don't worry, I won't "publish" your requests on this blog. It will be for only my eyes and the Lords.
So do it. Do it now. Do it once or every week if you need to. But email me and let me pray for you, as you have prayed for us. Nothing... nothing is too small. Here ya go... kasey_krawiec@yahoo.com
I'm waiting to hear from you, dear friend...

Friday, September 5, 2008

too much information

It's always ends up being an interesting reaction when you think you've come to terms with something or think you have a good grasp on a situation, only to then have it actually spelled out in plain reality and realize that maybe actually hearing it wasn't as easy to swallow as you simply thinking it.

Did that extremely long sentence make any sense??

Today a few other mothers on the transplant floor and myself had to attend a "discharge class". Ethan is not anywhere close to being discharged right now (he has still not shown any leaps in his engraftment numbers - we are at day +24 since his transplant), however, the information to get you prepared for your "life after transplant" can be given at any time. And since Ethan has done so well (meaning fever-free, infection-free, taking meds by mouth, and hearty appetite!), they believe that when he finally does engraft, we may be able to go home shortly thereafter. But, this particular teaching class has to be completed first, so they went ahead and added me to the session today.

Adam and I knew going into the transplant phase of Ethan's treatment that when the transplant was over, and we were able to go back home, Ethan would need to be in extreme isolation from the rest of the world for the next 9 to 12 months. No public places, no interaction with other people, no one coming into our house, etc. And today's info session helped to further explain why this is so important. Basically, even though the donor cells would have grown, his immune system has to rebuild itself. Everything in his body is "new" and has to "learn" how to function all over again. For this reason, his immune system is very, very weak for about a year after transplant. And any infection or exposure to illness could be very dangerous for him during that time. Now, he can slowly be allowed certain freedoms throughout the course of that time depending on how well he had been doing, but the "freedoms" would be being allowed to go to the grocery store at 7:30 in the morning when it's not crowded, or going to a restaurant at 4:00 in the early evening when the peak crowd has yet to arrive. But again, that's only about after 7 to 9 months of being in complete isolation... aside from being outside, outdoors with no crowds is okay.

Anyway, we kinda understood all of that, but learning everything else in this class just reiterated to me that this whole situation will not be over for quite some time. For the next 9 to 12 months: Any fever results in re-admission for observation - even if it's just a fever from teething! We can't assume anything, so everything has to be monitored. Any new rash, bruise, appetite change, change in stool, change in his urination amounts, vomiting, cough, runny nose... anything... requires a call to the doctor and potentially an emergency room visit immediately following. Which, depending on the examination could result in re-admission for treatment of infection, etc. We need to bring a packed bag anytime we come for an outpatient visit as it's not unlikely to be re-admitted for observation at any time, for any reason. We need to be watching for shingles, seizures, swelling around his central line (neck and face), bleeding of anywhere... the list goes on with other areas of focus being his eyes, mobility, mouth, digestive system. Not to mention the whole Graft-versus-host-disease list of symptoms to be watching for (which is the rejection thing I've mentioned to you before).

This is just a "pea sized" description of the amount of information that we have to be aware of and watching for when we are home with Ethan for the next year while his immune system continues to grow stronger and develop again. It's kind of a mess when you try to mentally absorb it all. Not to mention coming to terms again with just how isolated and separated our lives will be for the next year - Adam and I needing to take turns doing things (running errands, going to church, our own personal doctor appointments, etc) so that the other one can stay home and care for Ethan.

The only thing that kept going through my mind was that this... all of this... was not going to be out of our lives any time soon. But, you can't get worked up about something like these rules and restrictions because they are a necessary step in Ethan's overall healing process and taking care of him in the best way is the top of my priority list. But man, do I want some normalcy back into our daily lives. I want..... I want..... I want..... so many things.

Well, what I really want is for our little boy to be perfectly healthy and whatever sacrifice that requires, so be it. He's our son. His life has given deeper meaning to ours. And God's power has defied all the yucky stuff we were told to anticipate during transplant, and that same power can defy all the yucky stuff we're told to anticipate after transplant, right? Right.

My mind is about fried on this Friday, but....

Before I go, I want to share with you a part of the devotion that was shared at my baby shower (almost a year ago in November!) by one of my most favorite of Christian women. She took each letter of Ethan's name and gave it meaning. How incredible the work of the Lord when He gave this to her to share with me, knowing as only He could know, that one day I would need to cling to the special reminder. Keep in mind as you read through each letter, that this was given to me during my pregnancy... no thought of any cancer or illness or anything at that time. Only the anticipation of a little boy's arrival. Thank you again, Mary Parker... and thank You, Lord for your tenderness towards me.

Enjoy Ethan
Thank God for every moment
Have faith in God's plan for you and your family
Accept God's perfect plan for you right now
Never give up

Truer words were never spoken....

Thursday, September 4, 2008

when push comes to shove...

...get out of the way.

I've never seen a real fight break out in person, however I've seen enough captured on the nightly news or TV/movies to know that I do not want to be in the middle of any punches being thrown. In fact, I can't really even watch two people fighting. Anytime a news story broadcasts a situation in which someone was beating someone else up or anything like that, I literally have to turn my head and struggle to find the channel change button on the remote. I just can't handle it. Needless to say, 'boxing', I will never understand. I don't like a "good fight". A physical fight. It makes my stomach turn.

I thought about this as I've been struggling with faith the last couple of days. As the lies of the evil one tries, relentlessly, to shake me off the Rock.

I've tried to understand and fully comprehend all along that this is a fight. Not simply a fight against cancer in our little boy, but a fight for my heart and my mind. A fight of faith. And the battle has been long. But with your help the last couple of days, I'm a bit more refreshed. Thank you so much for the verses. Thank you so much for the emails. Thank you so much for the prayers.

I'm a bit stubborn sometimes... Adam can attest to this (though he better not!). And I can easily forget that this fight is not mine. My portion of the battle was won when the Lord saved my soul. Everything from that day forward, is the Lord's. Every mistake (and oh there have been many in my lifetime) were His to correct. Every fork in the road, was His path (even when I went the wrong way, He led me back). Every burden I took, He took back. Every good gift or lovely surprise, was His giving. As His child, I am all His. The good, the bad, the broken, the beautiful... He has given, corrected, fixed, and blessed. So this fight, though long, is not mine. The pushing and shoving of lies and fears do not need my involvement. God knows my heart's plea. I simply need to get out of the way. And, climb back up on the Rock of promises I've already been given.

John 11:3-4 - Therefore his sisters sent unto Him saying, Lord, behold, he whom Thou lovest is sick. When Jesus heard that, He said, This sickness is not unto death, but for the glory of God, that the Son of God might be glorified thereby.

Psalms 126:5 - They that sow in tears shall reap in joy.

Exodus 14:14 - The LORD will fight for you, and you shall hold your peace.”

Deuteronomy 1:29-31 “Then I said to you, ‘Do not be terrified, or afraid of them. The LORD your God, who goes before you, He will fight for you, according to all He did for you in Egypt before your eyes, and in the wilderness where you saw how the LORD your God carried you, as a man carries his son, in all the way that you went until you came to this place.’

2 Chronicles 20:15 - ...Thus says the LORD to you: ‘Do not be afraid nor dismayed because of this great multitude, for the battle is not yours, but God’s.'

Now that this is settled once again (and hopefully I don't soon forget).... I'm going to relax, continue to wait, and get a Diet Dr. Pepper.

Tuesday, September 2, 2008

uninvited guests tonight

I already posted something earlier today... and I should be sleeping... but I can't get these gnawing thoughts out of my mind. It's been three weeks to the day since Ethan's transplant. He's not showing real signs of engrafting the new cells yet. They tell us not to worry. They tell us cord blood transplants take longer than bone marrow transplants to develop into the patient's body. They tell us that there is still time and that they hope to see some activity in his counts within the next 5 to 10 days.
There's a tightness in my chest. Tears fighting to fall. If I were a leaf on a tree, this very moment would be my attempt at hanging on in the midst of the fiercest wind. The dangerous "what ifs" are knocking hard at my door. No, not now... not after everything has been so good... I can't let them in... we've come too far... I can't let them in.
Help me Lord as I'm tempted tonight
To 'wonder' if everything will be all right.
Fear begins to creep
And my eyes are wanting to weep,
But instead of unfounded sorrow
Give me assurance for the tomorrows.
Let this trial soon leave
And give me the strength to continue to believe
That his life will have Your favor
And sweet years ahead will be ours to savor.
Sweet Lord, whisper in my ear...
Remove the fear.

life worth living

I want to bring to light a prayer request for a little toddler that is in need of your prayers. She is currently under the care of her foster parents (Hope and Cesar Feliciano), who are hoping to adopt her soon. But the prayer request is that she is very, very sick. A sickness that has been with her most all her little life, with no known cause and likewise no known treatment for what is causing her continued illness, however the treatments and tests she's had to endure have sometimes caused more harm than good. She is now in the "fight for her life" as Hope put it to me in an email. With her permission, I'll share with you now the rest of her email to me....

"Cesar and I took her to Mount Sinai Hospital in Manhattan a few weeks back, to meet with a transplant team. They did a full work up of her (many tests), and came to the conclusion that she is going to need a small bowel transplant and possibly the liver. I knew in the back of my head but to hear it was overwhelming. The transplant team was wonderful and very professional. Cesar and I are very comfortable with the doctor and his team. He is one of the few doctors in the country that does this type of surgery. She will be put on the transplant list as soon as all the paper work is completed through DCF because she is still under the state until we get to adopt her. This part does slow things up... Right now she is at [Childrens' in Connecticut] because she got very ill while we were in NY and had to be admitted to Mt. Sinai. I stayed until she was transferred back to CT by ambulance. That was not a fun ride. She is doing better. They had to put another central line and put her back on TPN [intravenous nutrition], which by the way is continuing to damage her liver. If she does not receive the TPN she will eventually die. Her intestines are not absorbing nutrition from regular feeds, which was causing to get sick and lose weight. So, it's a catch twenty-two. She needs the TPN to live but it could also cause other complications and end her life."

Such a heart-breaking situation for this family. And what a testimony they are to welcome such pain into their lives for the sake of saving this child who would otherwise have been left alone. One of Hope's sons was in my kindergarten class last year and I got to see first hand how strong this family unit is, however they are in desperate need of prayer for their soon to be adopted daughter, Kevelyn. Pray that no complications arise with the adoption process, as well as for the transplants she noted above. This little girl has struggled most of her life to even be able to live today.... pray God's miraculous and speedy healing on her body. As well as grace, encouragement and strength to this family.

I was thinking yesterday that I had such an immature view of life before my son entered into mine. When I say immature, I mean small. I don't even think I can describe to you what I mean. Other than to say, if I did xyz, then I'd get xyz... plain and simple. No twists, no turns. The biggest obstacle being how big of a house would we be able to buy and how soon would we be able to buy it? Oh yeah, throw some kids into the mix, decide whether or not to be a stay-at-home mom, plan some memorable vacations, help out our church with some areas of service/ministry and with tithe, don't forget to clean the toilets before company comes over and stay on top of keeping in touch with friends and family. That about sums up what life should've looked like according to my once immature perspective. Everything perfectly in the realm of my control.

Needless to say, I have quickly learned there is so much more to life. Not because I've had to accept that our son was born with cancer, but because I finally understand that our purpose for being here is so much bigger than I ever cared to explore before.

Situations, both wonderful and horrible, are allowed to enter into our lives for a distinct reason. It's not just a run of bad luck, or a result of your failure to control it. The truth is, you can't control it and luck isn't anything more than coincidence. But the situation(s) itself, serves a purpose to grow you, change you, fix you, break you, mold you into the reason you were even created to live a life here on earth. There is goodness and blessing to be found, and to enjoy them is necessary. But we are here for more than our expectations. In fact, we often have to let our own expectations die and let God's desire and plan for our lives be fully born and developed instead. And even though that sounds like a disappointing sacrifice to have to make, it really isn't.

Would I have wanted a perfectly healthy baby boy? Yes, of course!! No question that we prayed for a healthy baby and earnestly wanted God's blessing in that area. And when we found out that wasn't what was in store for us... well I can't even describe it. "We found leukemia cells in his body".... I'll never forget those words - spoken to us nearly 5 months ago. But after the shock wore off and the acceptance moved in, I've truly come to understand that this is what life is truly about. Not the tragedy itself, or your worst nightmare coming to fruition.... but the opportunity to meet God, to really see Him, and know that He is here for you. It can really stop you in your tracks. Surrendering to Him, to be available to move into your purpose, it's a surreal thing. I don't fully know what that purpose is, but for the first time in my many years of being a Christian, I finally "see" that there is so much more to life...

Monday, September 1, 2008

cheerios & tiny toes


Ethan has now experienced cheerios.... and his toes. He's not mastered the art of swallowing either one. However, we will be practicing more and more. The cheerios that is, not the toes.
Today starts week 5 of us being here at Boston Childrens. Have I mentioned yet that I am ready to be back home? Not really lonely or bored, but very much wanting to be back in the comforts of all things mine. I miss small "Adam, Kasey, Ethan" freedoms... small personal freedoms.
I'm careful not to complain, as I understand this needs to be our life right now, and the Lord has been extremely gracious!! But I'd not be fully transparent if I wasn't honest... and the truth is, I'm ready to go home again. Ready to move on to a better "season".
Ecclesiastes 3 (various verses from chapter text)
To everything there is a season, a time for every purpose under heaven... A time to break down, And a time to build up; A time to weep, And a time to laugh; A time to mourn, And a time to dance... A time to gain, And a time to lose...
Yes, Lord... ready to build up, ready to laugh, ready to dance in delight of Your perfect healing... ready to gain. But I surrender those desires, with the help of Your strength, to Your perfect time. Your perfect season for our lives. But I do ask You to restore. I believe that You will. But even still, Lord God, I thank You for the protection, sustaining peace & strength, and the continued answer to prayers. You are truly The Rock of all things great and small.