Friday, May 9, 2008

I love sleep

Since we had been home from the hospital, Ethan started sleeping through the night (and it was wonderful!). I had gotten so used to the good sleep I was getting, that I was nervous that the nice little pattern we'd established might change once we were readmitted to the hospital. The nurse has to change his diaper every 2 hours while he's on chemo, to avoid burns, and his blood pressure/temperature are also checked throughout the night.... so I was so anxious about the fact that he'd wake up and not sleep due to all the interruptions. So, that was my private prayer to the Lord and I must let you know that Ethan slept perfectly last night. He did wake up and smile at the nurse when she changed him (she told me this morning), but he would go right back to sleep. How wonderful! Thank you, Lord, for the small blessings. I pray that continues the whole time we are here. I'm a MUCH better person when I've had some rest!

Ethan seems to be fine so far on the chemo. He's still active and has a good appetite. Continue to pray that the toxins from the chemo do not harm Ethan's body, but that it only does good things as far as killing the cancer cells and shrinking his spleen. And pray that his has no painful side effects.

Adam and I found out yesterday that when we go to Boston for our initial consultation they will tell us all the details of the bone marrow transplant.... progress they've made in finding donor matches, how long Ethan and I will be in Boston, the degrees of isolation we will have to continue to endure post-transplant, etc. Be in prayer for that meeting. It will be an all day event, and Ethan will need to be with us (for his initial exam). Begin to pray that Ethan isn't irritable or fussy that day, because he will be confined to his stroller or car seat for most of the time. But we first need the appointment. We're waiting for Boston to call us at any time, so we're praying that happens soon so we can know how to plan our immediate future.

I want to say something else here. All along I've said that I don't want to limit how God chooses to heal Ethan, but at the same time, I've been asking for prayer for a bone marrow match (since statistically, that is the only chance of cure). But I've been thinking lately that I shouldn't get discouraged if they don't find a match for Ethan or if it comes out that Ethan's body/situation makes him not a good candidate for a match. I've been asking for an obvious miracle, and God can certainly heal Ethan without the transplant. Of course, the odds that just chemo can rid Ethan of this disease are extremely low... but God doesn't follow statistical odds or facts. And though I am hoping for a transplant match and a cure for Ethan. I just want to be careful in my own mind that I don't put limits on what God can do. And I don't want to lose faith or hope in healing just because something may initially look discouraging. I don't know why but that thought process has just been on my mind lately. I pray the Lord will heal Ethan however He chooses to, and that He allows us the grace and strength to see any hiccups in the "plan" as His doing because He has a better way.

I've been in contact with that woman (Debby) in Alabama who's son (Parker) had and was cured from JMML. What an encouragement her words have been. I want to write more about what God has revealed to me through her, but I'll save that for another time. I'm still letting it all sink in.

We love you all. All who pray for and care about our family. Whether we've ever met or not. Whether we've been friends for years or for minutes, you're an intimate part of this family. We are beyond thankful for you and love you with a love that binds all of us to Christ... and to Ethan.

Thank you for that treasure.

11 comments:

Anonymous said...

Kasey,
YOU are a treasure!
Those of us who have never had the opportunity to meet you in person have been able to get to know you through your words/ through this blog. We have developed a love for you and your family (especially Ethan!!!)We pray for your family daily. It is thrilling to think of the number of people across the country who are praying for Ethan (and for his parents!)
Thank you for your regular updates on the blog that enable us to pray for your specific needs. The Lord has laid your little family on the hearts of so many already. Ethan's blog is not just an account of a little boy's illness, but a testimony to God's grace, unwavering faith and Christian love.
We are praying for continued grace and strength for you all!

Hollie said...

I just had to leave a comment to tell you how encouraged I am by you. Here recently I have experienced just a teeny-tiny tid bit of what you must be going through (And let me EMPHASIZE, teeny-tiny tid bit!!!) when my daughter was admitted into the hospital a month ago, and now we have been readmitted.

I can truly appreciate what you are going through every single day to take care of your sweet boy. I sit in this hospital room wondering what is wrong with my daughter and then I read your blog and am quickly reminded that she is being held tightly in His hands!!!! How cool is that?

It was so awesome to read that you totally give all of that to God and however, HE chooses to heal Ethan! So awesome. The hardest part is to let go, and let God!

I didn't mean to write a novel...you just reminded me this morning that HE loves us SO VERY MUCH!

I continue to pray for sweet Ethan!!

Brian said...

Kasey,
I have been reading your blog daily and am amazed not only by your strength but also by the way you are able to touch and inspire so many people, myself included, with your honesty and heartfelt candor. You could turn you blog into a book about your experiences to raise money for JMML or just to help other families deal with these experiences. I also wanted to say that I pray for your adorable son every night. If he is as strong as his mother you have nothing to worry about.
Brian O.
Connecticut

Anonymous said...

thank you for the update. i'm glad you both got sleep. that is so important when you have little ones especially when they are sick. we will continue to pray for no side effects. and healing for sweet ethan. whatever the Lord chooses to do in this situation, He has already worked everything out for good. the many people ethan has touched thru this is amazing. i will pray that thru this, many people will come to know Christ.
AMAZING GRACE HOW SWEET THE SOUND, THAT SAVED A WRETCH LIKE ME. I ONCE WAS LOST BUT NOW I'M FOUND: WAS BLIND BUT NOW I SEE.
your new friend,
michelle (mi)

Anonymous said...

Thank you for sharing your story. When we had financial problems I would desperately cling to God and pray to him through my days. Financially secure and 4 children and homeschooling and activities have made me think about God less. I was just praying a few weeks ago that God would give me that passion back again. Something that I could cry out to him for. I was tired of the same, petty prayers. Then I got an e mail about Ethan.
It has made a difference in my life! Thank you Ethan! I think about you through my day and I just say a prayer and feel a constant connection to God.
Love, Rebecca

Alicia said...

I know it was yesterday's blog but I am so EXCITED for you that Ethan rolled over for the first time! Enjoy every small moment because they go so fast. As Kirbee saw Ethan's pictures tonight she kissed him on the computer she told me to tell Ethan "rock star" her new favorite word- maybe he will understand! Love you and miss you we are still praying and thank you for the encouragement!!

Natalie Ezelle said...

Kasey,
I think it is amazing how God continues to give you blessings EACH day. I cannot wait to hear more about Jenny and Parker. How awesome that He has given you someone to "connect" with. He is clearly taking care of Ethan and giving you and Adam unbelievable strength.

I am with you in that I believe God will heal Ethan, but whatever method He choses as His "perfect plan," He has already used Ethan in so many ways to touch so many lives. You will not know until we get to heaven, what impact Ethan's life really has had, but know it has been big and will continue to grow in the days ahead.

Love you and praying for this situation daily,
Natalie

Anonymous said...

Oh Kasey,
I just wanted to pop in and tell you that I am praying for you and Adam...and precious Ethan each and every day. You are an amazing woman, mother and friend. Your words that you write are so powerful. You ought to keep everything you write and get that published! Remember that I love you and am praying for you daily! I ran into Debby and Tiffany Jones in Walmart the other night, and they wanted me to tell you hello and that they are lifting you up in prayer as well. I think Kim is going to email you...I will send them your address. Love you girl and am praying for you every day! Audrey

Megan said...

I am so glad you have been getting much needed rest. Sleeping all night is truly a gift for mothers. Kasey, I wish you a wonderful Mother's Day. You can tell Ethan feels your love by that smile on his face we always see in the pictures. You are a gift to us all. Thank you for teaching me so much about staying strong in faith. All of us sisters in Christ can look up to you. There is not a day that goes by we don't pray for your family. Please give Ethan lots of hugs and kisses from his fan club out here.
Love you all,
Megan, Washington State

Anonymous said...

Kasey,

I really don't have words to express how much God has used you and your postings with Ethan to touch my heart and I am sure the hearts and lives of many. I have asked several women on the Women's Ministry Team to be in prayer for your family, as well as, my dad's church in Trinity. I know that God's peace alone can surround you during this time and give you such comfort. Thank you for sharing your journey and opening your heart. I look forward with anticipation at the continued work of God's hand in Ethan's life.

Love in Christ,
Jaime Parrish Feaster

Mom K said...

Kasey,
Proverbs 31:10 says, "Who can find a virtuous woman..." Adam & Ethan have! The words in my heart & mind cannot even begin to speak the love and admiration I have for my wonderful daughter-in-law. I love you and praise God that Ethan has such a loving mommy as you.
All my love,
Mom K