Thursday, April 24, 2008

Thank you so much for helping us celebrate Ethan's 3 months of life yesterday by way of your comments and emails. God is using each of you to remind us of His love and compassion for us... thank you for continuing to be His "voice".

We found out yesterday that neither Adam nor I are a match for Ethan's bone marrow. We are each 1/2 of a match (which is good proof that we are his parents!), but not a whole match. Continue to be in prayer that a donor is found easily and quickly.

It's been 2 days since Ethan has started this new round of treatment, and what a struggle it is! The medicine is not really a "cancer" medication. It's really a drug used for adults with severe (very severe) acne. However, some research somewhere found that this particular drug actually helps kill off the bad cells in JMML patients. The tricky thing is that this medication only comes in capsule form. So you have to puncture the pill, squeeze the thick medicine out of it and somehow get Ethan to swallow it. We have decided that it tastes horrible... worse than horrible... because Ethan screams like crazy (turning red and everything!) and moves his body violently every time we've tried to give it to him. No wonder they keep it in capsule form!! The nurse and I tried to mix in a little baby food (applesauce) with it last night, but my sweet little boy wasn't fooled. It was terrible. We weren't even sure he got the full dose! He's supposed to take it like this for 10 days and so far it's only been 2 days.... and what a rough experience each time. I'm not sure the solution, as I will talk with the doctor about it today, but this is supposed to be the "treatment" that keeps him in good shape until the bone marrow is ready. I am not sure how effective it will be if we have the same struggles we've been having of just getting him to swallow it. It's so bad that the residual substance that was in his mouth got on his bottle nipple and he screamed every time he started to taste the nipple. So, of course we replaced it... but then again, it's hard to tell how much of the dose he's actually swallowing. We obviously need a better solution. Tonight we're going to try to mix it with cherry syrup that they have, but I'm not convinced that will work either... though I am praying it does. The little guy needs the medicine... and we need to find a way to get it inside of him without making him absolutely miserable (trust me, it would have broken your heart - if not scared you - to see his reaction last night!).

In other news... I was thinking random thoughts this morning in my state of sleepiness. I thought that I wasn't getting any sleep just being a regular mom to an infant at home... try attempting to sleep when nurses are coming in every hour to check various things going on with your baby AND also having to get up to feed him, etc. Man, I never thought I'd say I missed the OLD version of my sleepless nights. But anyway, I digress... I was thinking random thoughts this morning about the ways our lives have changed in the non-serious areas. How many times have I gone to the doctor's office as a new patient and filled out a 'new patient form' and breezed through all of the questions like... "Have you or any member of your immediate family ever experienced any of the following?" and then there's a laundry list of serious/chronic illnesses. I never give those a second thought... they are always "NO" or "N/A" for me. But now, I will actually have to pay attention and check of "yes" to cancer and/or leukemia. That's just such a strange thought. Or what about those commercials or billboards you see that advertise certain resources that are available for parents of kids that have cancer. Adam and I are one of those sets of parents now. Or what about a bumper sticker that you see on someones car that says "Donate Life" or a license plate logo that says "Cure Kids Cancer". I am a parent in which those things now hold special meaning. It's just funny how your perspective opens up and how your life is changed - even in the little things - when something like this happens.

So if you see a sticker, billboard, or even a blood drive sign... pause for a moment and say a prayer for the families in which those things hold great importance. I am forever changed with regards to empathy and compassion for those who have traveled this road we are on, and those who one day might have to as well.

My continued thanks for your continued prayers. The Lord is using you to help us have the courage and strength to continue each day.

A small p.s. - It's my understanding that you can subscribe to Ethan's blog by using the "Atom" link at the bottom of the this website. You can click on the link called "Subscribed to Posts (Atom)" which will then open an RSS window. In the right-hand column of the RSS window, there are several ways to subscribe to the blog under the heading of "Actions." Apparently, once subscribed, you would get notification whenever I updated the blog. If that's too complicated, don't worry about it! You can still just come check it whenever you'd like. But, in case anyone was interested, I thought I'd pass the info along.


dave said...

Kasey, thanks for the continued updates as it helps me to pray specifically for your needs on that day. Also, I have no clue what makes someone a more likely bone marrow donor for Ethan than not but if there's a way to be tested that may help, please let me know so I can be tested as well. We continue to pray for you, Adam & Ethan.

Dave Marine

Carrie Comstock said...

Praying that you all are able to find an easier way to give little Ethan his medicine! Also praying that a donor is found quickly. Thank you for the updates.

Mom K said...

Jeremiah 32:27
"Behold, I am the LORD, the God of all flesh. Is there anything to hard for me?"
Love you,
Mom K

Honea Household said...

I count it a priviledge for pray for you and your family, especially Ethan. I hope you can get something figured out to get that medicine down him. Poor baby. :(

Anonymous said...

Adam, Kasey and little Ethan,

I'm reminded of a song about Christ's miracles that I listen to often in the car and think and pray for you..."He didn't pour out the water, but He made it into wine. He didn't bring the loaves and fishes, but He made them multiply. So when the God of all creation puts you to the test, just do for Him what you can do, and He will do the rest."...even take a drop of medicine which we think is just not enough and make it meet the needs of your little boy. How awesome is He!!!! :)

Continually praying, Jennifer

Anonymous said...

Poor ethan! my heart goes out to you. i have 3 small children and know how hard it is sometimes to give them just regular medicine. i'm sorry it is such a struggle. we will be praying that they can find a way that is easier on your baby.
God doesn't promise the cross will not get heavy or the hill will not be hard to climb. but don't worry because our God is right there to walk, climb, run, or carry you thru it. when you feel you can't go any farther, just stand in the presents of the Almighty God and let Him carry you and perform His wonderful miracles!
michelle from portland, michigan

Anonymous said...

I am praying for all of you. I was just wondering if it would help to put the medicine in a syringe & try to put it in the back of his mouth? This may be what you are already doing. I will pray for it to be easier.

Kim said...

Kasey, Adam and beautiful Ethan,
I continually pray for your needs as you post them, and comfort all the time. Poor baby, having to take this awful yucky stuff!! (He still knows what he wants and doesn't huh??).
"Lord, please give Kasey, Adam, and the nurses a way to get Ethans very important medicine in him with little distress for all, Lord, you are the Master of all and You can make this happen without our help, please help them here and make this awful situation a bit easier. Thank you Father."
Happy 3 months Ethan!
Thank you for sharing all the beautiful pictures with us, he looks so happy and like he is having a ball!! Go figure. God is good that way, and all the other ways He is good. Praying now daily for a donor match.
Kasey, thank you for being a blessing to all of us, you are touching people you don't even know and may never meet (until heaven I would guess!!). Someone wrote the other day you should write a book to help other parents going through crisis. You have a gift and through your pain, and even your pity parties (I think those are allowed once in a while, as long as you leave!!)you are blessing a world of hurting people. Thank you for allowing us into your lives and letting us share your burdens with you. Galatians 6:2 "Bear ye one another's burdens, and so fulfill the law of Christ"
We Love you,
the Webers

Moz & Pam said...

Kasey, you & Adam are so wonderfully transparent. It takes a truly humble person to share your heart with so many people. I agree, you ARE a blessing to so many. What an example you are to everyone. We'll be praying for a donor match!

Janelle & Ella said...

Kasey, there is also this thing called Sitemeter ( that you can put on your blog. It's a really cool tool that allows you to see how many people and even (sometimes) who is visiting your blog. It gives you graphs with how many visitors you have per day/week/month and year. I think you would find it very interesting because I know you have a lot of people visiting your blog to know how they can pray. Love you!

Grandma Kay said...

I am not eloquent in words, but my heart & prayers are with you always. I keep hoping that the bone marrow registry would call me to donate. Adam was a dear friend of my Jacob's growing up & I enjoyed him so much. May God continue to richly bless you & provide for you all. I wish that I could do more but there is nothing so great as prayer & faith. Love in Christ, Kay Hayes

Grandma Kay said...

for the medicine...
I work in the ER & when I have bad medicine to give babies, I pop a lolly-pop in their mouths right after. You might try one of the little dumdum pops, first dip it in water to start to get it slimy.

carleigh said...

grandma kay's suggestion is awesome! i'll have to remember that one!! love you kasey! (and adam too!)

Hollie said...

I'm not sure how I found your blog...but I have been praying for your little man. He is absolutely stinking cute!

Thanks for the updates...I will be praying that you guys find a solution to giving Ethan the meds. Also, praying for much needed rest for you!!

Anonymous said...

i know i have already written on your blog today but i was thinking about you guys tonight. i went and checked on my 10 month old tonight. i was watching him sleep and thought of you and ethan. i prayed again for a miracle. i am also a 27 year old mother and i can't at all begin to imagine what you are going thru as a mother. all i can say is from one mother to another, i'm praying for you as a sister in Christ.
michelle from michigan

kelly said...

You have such a beautiful way with words. We think of ya'll often and miss you very much.Ya'll are wonderful people (my sister of course) and ya'll are in our prayers.....We love you and give Ethan a big kiss from his new cousin Addison. I know she can't wait to meet him. We love you