Wednesday, August 13, 2008

Day +1 after transplant

Thank you for praying... Ethan did receive his cord blood transplant yesterday afternoon at 3:00. It was somewhat anti-climatic, but we made a memory of it anyway! I had the video camera out as the nurse hooked up the new donor blood cells to Ethan's IV line and as I was talking to Ethan on camera.... he fell asleep. But that's okay, Adam and I were fully in the moment even if our little guy was tired.

The transfusion itself was quite simple. It only took about an hour for all the new cells to be completely delivered into his little body. However, the night before (Monday night) Ethan did start to develop hives... a slightly delayed reaction to the ATGAM (horse hormone) that he had received the past 3 days. The hives started out small, but they soon took over his whole face and head. He has a few on his chest and abdomen as well. It's VERY sad to look at him covered in red splotches, but we've been assured it looks worse than it is. He's getting benadryl around the clock to help with the itching.

Last night, Ethan was not feeling very well. I couldn't get him to fall asleep, and around midnight he got chills, and shortly thereafter, a fever. Due to the fever, he will now be on heavy antibiotics to protect him against any type of infections. I don't like this, however I know it's necessary. I say that because, these are the antibiotics that have been known to cause hearing loss and kidney failure with excessive and prolonged use. Yes, I'm trusting the Lord with those "issues", but as a mom... well, I just don't like the idea of such possibilities.

He's been okay today, but it's obvious he is not feeling well. I'm sure the 18 medications he is on every day (yes, I said 18, and that is NOT an exaggeration.... and some of those he takes several times a day!) have taken a toll on his energy level. I know all of this has taken a toll on me. I've not been able to sleep much at all during the night. Last night it was due to Ethan not feeling well, but the past nights it's been hard to sleep with the nursing staff coming in and the beeping monitors that are hooked up to Ethan. Needless to say, I've still been a bit of a grump. I begged God for rest last night.... but it didn't come. I'm trying to not let it phase me, and I know enough to know that God is there even when we do not "feel" His presence... but, I'll be honest... I'd sure like to "feel" Him today. Not because Ethan is doing poorly, because all in all, he is doing well. But more because I am doing somewhat poorly and just need a touch from the Holy Spirit. A mini revival in my own heart.

I will leave you with a few more pictures. The packet of blood that you see is the actual transplant that Ethan got yesterday! Those are the precious new donor cells that are now swimming around in Ethan's body. Pray that they engraft quickly into his system! The red-faced child you see in the pictures would be our little cutie, covered in hives yesterday (unfortunately, it's much worse today). The first picture is the sign the staff put on Ethan's door to mark the occasion.





Oh yeah, I'm still having to come to Starbucks...at least I have found a new drink that I like!

19 comments:

Audrey said...

Oh my. He is the sweetest, cutest thing. Happy second transplant day Ethan!! Give that baby a kiss from me and know that I am praying for yall continually! Love you!

Carrie Comstock said...

Awwww...look at that sweet baby boy. Even with the hives, his eyes just twinkle. What a precious little love.

We're praying that the Lord uses the cord blood to do an amazing work in Ethan's body!

Anonymous said...

Kasey...just want you to know that I'm thinking of you and wish I could be there to hang out with you...(even though we've never met)...just to fill all that 'lag' time...My daughter is Gracie...She is 3 and also has cancer....We're actually in the middle of her 46 chemotherapy treatments...We also had to stay in Boston for about 7 weeks for proton radiation at Mass General Hospital....I can also relate to sleepless nights due to beeping monitors and nurse visits...it can be so frustrating!...and then having to deal with everything with little sleep!..Just be encouraged...You're doing an awesome job...The day by day can be so challenging especially when family and friends are no where around....but hang in there!..We're cheering for Ethan...He's adorable!...and get yourself an extra Starbucks everyday!...You deserve it!

Moz and Pam said...

Praying for his hives to subside ASAP!

Anonymous said...

I'm crying about the hives and also praising the Lord that the transplant is complete. Just praying that the cells will "take" and do everything they need to for a cure. Lots of love, Mrs. Rogers

Anonymous said...

Dear Kasey,

So happy the transplant took place as scheduled! How exciting! I'll be in prayer for Ethan, especially his rash. As I'm going thru a nasty bout of poison ivy, I can sympathize with an itchy rash. :) I'll be in prayer his clears up quickly.

I read Lydia's blog again today and her mom wrote that she was in Starbucks, as you find yourself, and she saw a woman reading her Bible and asked her to share what she was reading. She needed, like yourself, a dose of the Holy Spirit. I'll pray the Lord sends someone your way to share a moment with you.

"Just walked down the street to the coffee shop; Had to take a break.
I'd been by her side for 18 hours straight. Saw a flower growin' in the middle of the sidewalk; Pushin' up through the concrete; Like it was planted right there for me to see. The flashin' lights; The honkin' horns all seemed to fade away. In the shadow of that hospital at 5:08, I saw God today."
Sung by George Strait

Continually praying,
Jennifer

Jenn_N_Luc said...

Hi Kasey...to be honest, I can't really remember who referred me over to your blog?? But, regardless, I've been checking in for a while. I just felt like I needed to let you know I'm here and praying for your sweet Ethan.

Praying specifically for Ethan...that the new donor cells will engraft into his system and wipe out the cancer!! I pray for his side effects to subside and give him some much needed relief and rest. Also, praying for you that you, too, will get some much need relief and rest.

Anonymous said...

i think it's more than ok that your're a little grumpy. you are no doubt going to mirror your little boys emotions. who could blame you? and just like you understand when ethan is tired and upset as a result of all of this... don't you know your Father understands that you too are tired and upset?
praying for ethan in arkansas, jennifer glover

Hollie said...

Kasey, I am praying that you feel the Holy Spirit and HIS touch now. You are one tough Mama!

Praying for sweet Ethan, of course! Praying that those antibiotics don't do anything but help the infection (no other side effects!!), for the hives to go away and that his new donor cells will engraft very soon! Sending Love & Hugs your way!!

Oh, and of course praying for some much needed sleep for you!

Shera said...

Still lifting your entire little family in prayer and trusting that you will get an amazing rest and that Ethan's hives will disappear.

Blessings
Shera

Megan said...

Hi Kasey,
Gosh, I don't know what to say to be honest. I am filled with so many emotions. I am putting myself in your situation as a Mom myself and feeling those emotions and then I am feeling then I am feeling a huge amazement about what God has done. I can't help but feel relived this day as come and gone and now Ethan is on his way to recovery and complete healing from God. I will continue to pray for little Ethan every single day and I will make sure to pray for rest for you. You have to be emotionally and physically exhausted.
I wish I could take over for you and let you rest but since I can't I will lift you up to God and he will do it for me.
Sending you all lots of love!!!
Megan

Linsey said...

Even with those mean hives, he still has the sweetest little face! I love the poster...what a great mom you are! Hang in there. Oh, where can I sent Starbucks giftcards??? Email me with an address!

Anonymous said...

Congratulations! This is a big step to Ethan's recovery. I know the hives must be hard to look at as a mother. Next time you're at Starbucks, try a Tazo® Passion™ Shaken Iced Tea Lemonade. I'm not a coffee drinker, so I found something I love.

Anonymous said...

Hey Kasey--I'm so glad that Ethan has received his transplant, but my heart broke when I saw his beautiful face! Pastor Rob said in tonight's message that God is in the business of healing bodies and broken hearts. I know your heart is so full of so many emotions and that at times it is breaking when you look at your precious little boy---but God is the Great Physician! He is sufficient to get you through this! We love you all and are praying continually!! Try to enjoy your time at Starbucks! :) Love, Molly

huntsouth said...

We heard so many great things about our Great Physician tonight at church. We prayed for Ethan and for you. Jesus performs the service of healing the brokenhearted and we should never underestimate His great power. Why do we doubt?!!God is in control!
(and He remembers that we are dust!)
"The Spirit of the Lord is upon me, because he hath anointed me to preach the gospel to the poor; he hath sent me to heal the brokenhearted, to preach deliverance to the captives, and recovering of sight to the blind, to set at liberty them that are bruised, To preach the acceptable year of the Lord." Luke 4:18-19
Victory is sure! We love you and praise God for His tender care of all of you. Serve the Lord in your new little home. You're all there for such a time as this. All our love, the Hunts

Sara said...

Dear Kasey,
We will be praying for some much needed rest for you and that your sweet little boy's rash will go away quickly. There are several families from our church who are sharing in prayer for Ethan's transplant to take and praying for you and Adam as well. As I was reading today's blog a verse came to mind, "I will keep him in perfect peace who's mind is stayed on Thee." You are doing great! Just the fact that you are beseeching the Lord to work on your heart is such a testimony to those of us who are reading your blog regularly. Thank you for encouraging me to stay on my knees, and thank God for each an every day He blesses me with my boys! Love and prayers, Sara R.

littleleaps said...

HAPPY TRANSPLANT DAY (yesterday)!!! Does He smell like creamed corn or anything else strange? Lydia, did for several days. I still can't eat corn.

Lord, Be blessed in Ethan's little body. We beg for your precious marrow to be reflected in this new marrow for Ethan. That he would be completely be healed by your power and mercy. I pray this in the name of Jesus.

Elizabeth said...

Hey Kasey, I'm so happy that Ethan has received his transplate, But my heart broke when I saw his beautiful face! We will be praying for some much needed rest for you and that your sweet baby Ethan rash will go away quickly. Seanding you alots of love!!!
Elizabeth&Family

Kelly Benjamin said...

Ethan is just the sweetest little one I have ever seen, so strong and still smiling after all he has been through...He has the best "genes", you know??? God we pray that these new cells help fight for Ethan and make him a healthy little boy. Let his beautiful smile keep shining on us through these days. He has so much to live for, he has family that love him and can't wait to finally meet him.....We love you