Monday, August 11, 2008

lots to say!

Wow. I should really just leave this post with only that word. Wow. Yep, that would sum it all up…. So I’ll let you go now. See ya!

Just kidding…. I’m dying to write to you and to publicly express God’s perfect goodness once again. As I mentioned a few days ago, we were told to prepare to expect Ethan to have a pretty rough weekend. We were told to anticipate fevers, chills, extreme irritability, hives and flu-like symptoms. With tears in my eyes (what else is new), I want you to know that not one - NOT ONE - of those symptoms or side effects were at all present in Ethan’s body or demeanor thus far! The steroid medication and the ATGAM medication (which is a horse hormone used to suppress the immune system - yes, I said horse…) are the medications that typically cause one or all of the above referenced side effects. He started them on Saturday and he will get his last round this afternoon from 2:00 until 8:00, then this phase will be completed. I am so thankful to the Lord for his obvious protection and favor upon Ethan!! I am so happy he didn’t get a fever in particular, because if he had gotten a fever during this part of the treatment regimen, he’d have to have started on 2 to 3 antibiotics that he’d have to STAY on throughout the next several weeks. These antibiotics are extremely strong and can cause long -term complications with hearing loss and kidney failure… that’s not always likely to happen, but a possibility… but it’s something we didn’t even have to give a second thought because Ethan didn’t have any spike in his temperature readings (and it is checked every hour!) And the amazing thing is that fevers are basically always a side effect…. but not when God says mercy and grace says “no“….

Thank you, Lord. Thank you, Lord. Thank you, Lord. Thank you, Lord.

Before I go any further, you need to know how much your prayers play a crucial and critical role in Ethan’s life. I am often quieted and in awe at the prayers being lifted up, literally around the world, for our little boy. By people who know us and by people who’ve only “met” us through this blog site. That you’d even give our family a second though, let alone a third - fourth - or fifth! Is simply and truly amazing to me. I pray God’s blessing and favor be with you and your family as a reward to you for your diligence and faithfulness to continually come to Him on behalf of us. I do not believe there is a sweeter gift you can give someone than to really pray for them. Thank you such a wonderful gift you continue to give us.

Let me also say thank you to those of you who have sent us cards and who have even given gifts of generous measure. I’ve not had an opportunity to contact you directly and “thank you” for your kindness, but know that you touched our hearts and blessed us in a great way!

In addition to the medications I mentioned earlier, Ethan also went through 2 rounds of chemo over the weekend. And not one complication or side effect resulted. He has been in a perfect mood every single day. Playing, laughing…. Completely being himself, as you can see in the pictures I’ve been taking the last couple of days (be sure to take a look at them at the bottom of this post). His appetite has even stuck around, too! We were told to expect him to stop eating by now, either due to loss of appetite or due to mouth sores…. and yep, you guessed it…. neither are a problem for him yet! I just can’t process all that he’s been through and how EXCELLENT he has done. We were thinking he’d be sluggish and lethargic by now - but that is definitely not the case! He’s a little sleepier than normal, but that’s fine with us, because the extra rest is good for him…. and I’d much rather him be sleepy than cranky/miserable. I wish you could see how well he is THRIVING throughout all of the junk his body is having to endure. You’d never guess this child was about to get a cord blood transplant TOMORROW!!!

Speaking of, Adam and I are getting some balloons from the gift shop tomorrow to mark the special day. They had a Red Sox one the other day, but I think someone already bought it. It may end up being Nemo, Mickey Mouse, Elmo or something like that, but regardless, it’s a day to celebrate! And I couldn’t resist a few new toys for him, either! Be in prayer that the transplant settles easily and quickly into Ethan’s body and that he does not reject the new donor cells. It will take a few weeks before we know, but proactive prayer is always appreciated!

With Ethan doing so well this weekend, Adam and I were able to steal away each afternoon and go for a walk exploring our new area & get out for dinner each night. (Adam is here until after Ethan’s transplant tomorrow). All in all, everything is going so wonderfully well with Ethan. He’s tired sometimes, but that’s to be expected. But he still has such a very active and smiling personality!

Thank you for praying for us. Thank you soooooooooooooooooooooooooo much for that! You are getting us through this, each and every day, by asking the Lord for His abundance to be given to our little boy…. And He has been generous in His giving.

Praise Him! Praise Him! Praise Him!

As usual I have more in my heart and mind that I want to share, but I’ll save it for another day. I am across the street at Starbucks sending this to you because I still can’t login to the website in the hospital… and although I’m enjoying the atmosphere and the view and the green tea here at Starbucks, pray that this situation can get correct today, so I can login whenever I have a free moment in the room.

Thank you, Lord, for Your powerful kindness to Ethan this past week. I sometimes fail to ask You for things, or think that I shouldn’t ask You for things because I don’t deserve such favor or blessing… but I’m trying to fully grasp that there’s NOTHING I can do to deserve anything from You. And yet, that doesn’t stop Your desire to give… to love… to amaze. Thank you that this unworthy vessel is continually covered in Your grace. Thank You that Your mercies are new EVERY morning. Help me not to miss this, Lord. Help me not to miss what You need me to do because I can’t get out of my own way. Create in me a clean heart…. And renew a right spirit within me.

________________________________


P.S. - Several have asked us for an address here at the hospital, I am happy to provide that to you! Please note, however, that we cannot have plants or flowers delivered to our room. Due to the potential fungus and bacteria that plants/flowers can harbor, they aren’t allowed on near around the transplant patients and their suppressed immune systems. If you have our home address, Adam is still home during the week, but if you want to reach me or Ethan at the hospital please feel free! Just use the address exactly as follows (use Ethan’s name as he is the patient).

Children’s Hospital Boston
Patient: Ethan Krawiec, 6 West, Room 603
300 Longwood Avenue
Boston, MA 02115

__________________________________


Another P.S. - Thank you for praying for our friends Mike and Amy Lee & their daughter Micaiah (still in the womb). The newest information based on the recent ultrasound is as follows - copied from an email sent from Amy:

1. The cyst is still there, though very small. However, the size of the cyst was never measured to begin with (that we know of) so we're not sure if it's the same size or smaller. We are fairly certain it's not bigger just b/c it is so small (2 mm). 2. There is now fluid in both of her kidneys, though not a large amount at this time. So what does all that mean? We don't know. We went from having one potential marker for Down's to two potential markers. So that much isn't "good." But it doesn't necessarily prove or mean anything at this point yet either. So she still could be healthy (not have Down's). My doctor is now more concerned about the kidney issue than the cyst. Even if Micaiah doesn't have Down's, it could still be potentially dangerous to have fluid in both kidneys. Therefore, we have to go see a specialist in 3 weeks to have yet another ultrasound. This type of doctor specializes more in high-risk pregnancies and complications. The ultrasound will be more thorough/detailed. As of this point, our biggest prayer request is that the fluid in her kidneys would go away (ideally). At the very least, we don't want the fluid to increase. If it increases, it could pose a problem to her regardless of whether or not she has Down's. If the ultrasound shows that the kidney problem has gotten any worse, then the problem will have to continue to be tracked the rest of my pregnancy and potentially they will have to deliver her early.

Continue to keep Mike and Amy & their little baby in your prayers.

________________________________

ONE LAST THING.....
Say Hi to our little man!


20 comments:

Anonymous said...

Wow, what an amazing answer to prayer. I have been thinking of you guys and especially Ethan a lot this weekend (and praying, of course!). So thankful he didn't experience ANY of the side effects!
Love,
Amy & Mike

grandma kay said...

The Hayes' of WA are so blessed by your story & God's grace. I continue in prayer for you all, esp. Ethan. Looking for God's perfect wonders.
Grandma Kay

Jennifer Wiser said...

yeah! yeah! yeah! I am praising the Lord this morning for His wonderful grace and goodness in Ethan's life. I can't wait to hear how He continues to bless and heal Ethan. We are praying and anticipating great things.

Love and Hugs from Michigan
Jennifer and family!

FalkFamily said...

Praise God! I read this with tears streaming down my face. I am so ready to celebrate tomorrow with you guys from across the country! Ethan will be in my prayers tomorrow that all of the donor cells are taken in and thrive in his little body. I am expecting to see nothing less.

With much love and prayers,
Lindsay

kari said...

Praise Him indeed!! I love, love, love the new pictures!! :)

Continually praying...

Jennifer Powers said...

Amazing! I've been praying daily for Ethan and I'm so happy to hear that he hasn't had any of the nasty side effects. God is so good! His pictures are precious. What a happy baby!! Praying for Ethan's transplant tomorrow.

Jennifer

Hollie said...

PRAISE GOD, PRAISE GOD, PRAISE GOD!!!

I had tears in my eyes as I read your entire post about how well sweet Ethan is doing!! And how stinking adorable is he in all the new pictures...he looks so happy! Praying continually! Can't wait to hear more....

Carrie Comstock said...

What AMAZING news!! Simply amazing. Thank you so much for taking the time to update us today!

Anonymous said...

We are so thankful to hear the news and praising God for his everlasting faithfulness. Glad to hear also that you and Adam have had time to leave the hospital and explore Boston. Any Olive Gardens?

We are lifting up Ethan today especially during the transplant. With all our love and prayers. Sharan and family

Janelle and Ella said...

PRAISE the LORD! I have goosebumps all over!! Awesome news. God is good and so faithful. What a testimony. I am so happy for you guys! Ethan will be in our continued prayers!

Anonymous said...

my... you're little man looks so great! you'd never know he's sick by looking at those pics! what a blessing!

praying always!

Anonymous said...

Kasey and Adam...God is soooo...GOOD!!! I am thrilled but not at all surprised by the great news! We have all been praying so faithfully that I truly expected nothing less! God is truly teaching us all the power of prayer through your lives! Thank you for being such a willing vessel. You could have been an unwilling vessel, but, I would venture to say, that we would not be seeing so many miracles day after day! I can't wait to see the miracles that are to come! We are praying for you daily!
The Lang Family

Judy said...

Kasey and Adam,
Praying for you and Ethan as he finally has his procedure. I have been following your blog and it is wonderful to know how God is Blessing little Ethan with no side effects from all that has been given to him. The new pics are so cute of him. I'll be in prayer for you all especially tomorrow. God is soooo Good isn't he. A friend in Christ in Canton, N.C. Judy

Moz and Pam said...

WOW!! Praise the Lord!! What an awesome display of God's power and His control!! We serve such a mighty God!! Looking forward to more answered prayer in the days and weeks to come!! We'll be praying extra hard tomorrow for Ethan's bone marrow transplant!! Remember, Ethan is in the hands of The Great Physician!! The other doctors are just His instruments.

Maggie Jurczyk said...

Dear Kasey and Adam,
It's so great to hear that Ethan is not experiencing any side effects. We hope he continues to be well and pray that the transplant goes smoothly tomorrow.
Praying for all of you,
Love, Maggie and Tom Jurczyk

Marge said...

PRAISE THE LORD EVERYTHING IS COMING UP ROSES, I'M JUST THRILLED TO SEE HOW GOD IS TAKING CARE OF ETHAN AND HIS MOM AND DAD.

i WILL BE IN PRAYER ALL DAY TOMORROW FOR THE TRANSPLANT

Marge

bryana said...

Hey Kasey! Just got your text, and wanted to let you know that I passed along the info to Leah, and she is having it sent out in their pray band as we speak and my mom is sending it out right now as well! Hold on Kasey! Ethan is such a strong little boy and the Lord is the great physician! So far they seem to be working great together! :) God is good! I'm praying for you to Kasey! I can't imagine the daily battles you face! I pray the Lord will continue to give you unwavering faith and strength for each day! Kasey, you have about a week and a half down!! That is exciting! You need to make a paper chain! by the way! Ethan is such a beautiful little boy! His smile is so contagous! I cant wait to see him in person!Keep on going!

huntsouth said...

I will praise thee; for I am fearfully and wonderfully made: marvellous are thy works; and that my soul knoweth right well....
How precious also are thy thoughts unto me, O God! How great is the sum of them!....When I awake, I am still with thee. Ps. 139
We are so excited about each new day's blessings upon you and on us as we share in Ethan's daily life. We love you all so much. The Lord could come tonight, but if He doesn't, have an exciting Tuesday! Love, the Hunts

Kelly Benjamin said...

Ethan, we are thinking and praying for you today, like we have done for the last few months. We can't wait to hold you and give you lots of hugs and kisses...Addison sends her love to you...My sister, you are the most amazing mother and woman.....We love you all so very much......

Elizabeth said...

PRAISE the LORD! GOD is GOOD All the Time!! Praying for you and Ethan as he finally has his procedure. It's so great to hear that Ethan is not experiencing any side effects. We'll be praying extra hard today for Ethan's bone marrow transplant!! The new pic are so adorable he look so happy and strong! Can't wait to see all three of you in person..
With alots of love,
Elizabeth & family