Tuesday, May 20, 2008

Here we go...

Tomorrow (Wednesday) Adam, Ethan and I head out to Boston for our first consultation appointment with the transplant area of Boston Children's Hospital. At our outpatient visit here in Connecticut yesterday, Ethan's doctor advised again that we should expect the consultation to be a bit rough... meaning, no "sugar-coated" information. He warned that the details and information we receive will be tough to hear and hard to digest. He then stated something that I hadn't really considered. He said after the appointment in Boston, Adam and I then have to make a decision about what road we want to choose with Ethan's treatment. I told him that I didn't think we had a choice - I thought a transplant was really our only option. He said that even though the chances of Ethan's survival are more increased with the transplant, it is still not guaranteed, and Ethan will potentially have a very difficult time with the details of the transplant since his disease is so hard to treat... and it's a very dangerous type of treatment.... with again, no guarantee of it working. The alternative would be to stay at the Connecticut Children's Hospital (where we are now) and go through a very hard and intensive chemotherapy treatment - much harder than he's been through to date - and hope that the chemo itself corrects the problem. However, the chances of JUST chemo curing the disease are very low. Either decision is full of risk and full of all kinds of possible side effects and dangers that no one wants to see their child endure. Adam and I are praying - and I'm asking you to be in prayer as well - that we make the decision God would have us to make. Adam and I need to both be at peace with the decision that is ahead of us... pray for absolute peace in both our minds about the kind of treatment that God wants Ethan to go through in order for his complete healing. There are many pros and cons that we have to consider with whatever treatment plan we decide upon. Pray with us that we will leave the meeting tomorrow afternoon and feel confident about the direction we need to take for our little boy. Please pray for safety as we travel to Boston and as a side note, be in prayer for Ethan's white blood count to start going back down (they rose slightly yesterday) and pray that his platelets go up in number (they were down slightly yesterday and he needed a transfusion at our outpatient visit).

Thank you so very much for your help in prayer during this time. I'm so very thankful for your kindness and your desire to pray for us. In my mind I have placed no limits on what God can do in healing Ethan's body. However, we need God's wisdom, strength and peace to make the right decision FOR that healing.

I don't want my little man suffering.... regardless of the path we take.... God, please don't allow him to suffer.

28 comments:

Unknown said...

Kasey,

Just wanted you to know we are reading, watching, and most importantly praying for you guys this week and in the days ahead. I'll email you as well. Please know you can call me at any time if you want to talk to me for encouragement, or have any questions. Although we've never met, I'm here for you any time (and I do mean any time - please call no matter the hour - I would love to talk to you)

Jennifer Wiser
(mommy to Alex - dx JMML 3/06;
BMT 7/06; currently, remission)

Anonymous said...

Kasey and Adam,

We will definately be praying that the you see clearly the direction that the Lord wants you to take. You and Adam are doing a fantastic job as parents. We will be praying extra hard tom. morning. Hang in there.
Love Sharan

BE STRONG AND COURAGEOUS....
DO NOT BE DISCOURAGED, FOR THE LORD YOUR GOD WILL BE WITH YOU WHEREVER YOU GO . JOSHUA 1:9

Aimee said...

Just wanted to let you know that I am praying for you. I found your blog (I don't remember how) a couple of days ago, and have been praying for you guys!

Marge said...

Kasey,
I’ll be praying for you both to make the decision that is God’s will for Ethan treatment.
I know that the lord will give you the wisdom and peace to make it.

Praying For You

Marge

Carrie Comstock said...

We are all praying for you, Adam, and Ethan. I know tomorrow will be an overwhelming day. I will be praying for peace and clarity of mind. Thank you for sharing specific requests with us, it is wonderful to be able to pray for specific needs. May you feel the presence of the Lord right with you as you take these next steps.

Janelle and Ella said...

I know that is the main cry of your heart, that your little boy won't suffer! That is my cry for you. I will be praying, especially tomorrow. I KNOW God is going to give you a clear direction!

Anonymous said...

God will be with you as you make your trip to Boston. I know that you are praying to make the right decision. He will guide you to whatever way HE wants it to go.

The Drama Mama said...

I am on my knees praying for everything that will take place tomorrow...I will be praying all throughout the day!

Praying for a great, stressfree appointment and peace and wisdom with all the info you learn and all the decisions that have to be made. Praying for Ethan's numbers and for saftey to and from Boston.

I pray God makes it VERY clear which way Ethan's treatment should go...I know He will! Sending lots of love, hugs & prayers your way!!!

Anonymous said...

i will pray for your meeting tomorrow. i'm sure you will be having incredibly hard decisions to make in the near future and we will pray God gives you His peace that passes all understanding. I will pray for strength as you hear candid news tomorrow, but remember that God Almighty will be sitting in that meeting with you.:) We will also pray that Ethan will be comfortable and content tomorrow.
michelle

Anonymous said...

We're all praying for you and asking God to give you power, love, and a strong mind. The doctors, too. Ethan, too. Lots of love to all of you.

Mrs. Rogers

The Drama Mama said...

And when I say 'stressfree', I mean I will be praying that Ethan is content and happy in his stroller and/or car seat so you and Adam can hear all you need to, and have a clear mind. Can't stop thinking about you all!

Curt Dunn said...

Kasey and Adam...

I simply wanted to echo the sentiments of most of the comments that you have received. I will be praying for your trip to Boston, for Ethan to have a calm trip, and for the two of you to be able to make the appropriate decision(s) for your family's future. "Faithful is He that calleth you, who also will do it" (I Thessalonians 5:24)! God has called you to a daunting task, but He will guide you!

CWD

Anonymous said...

Our prayers are with out and your family for understanding at the meeting and for the Holy Spirit to guide you in your decision of treatment for Ethan. I pray for continued strength and courage for you and Adam throughout these truly difficult times.

Anonymous said...

just figured out how to use this as a method of comment, but I have been praying for the three of you for weeks. Believe me (no not me---the Word)the Lord will give you peace.

jennifer said...

My friend, Erica Brandt sent me to your blog and has been asking everyone she knows to pray for sweet Ethan. Know that you have a base of prayer support in Memphis, TN... People who don't know you personally are touched by your story and are fervently praying for you and your family, sweet sister!

Jennifer Tillman

Anonymous said...

Dear friends,
You have a really big family!! The best thing about that family is our Father in heaven, leading you gently and guiding you. Answers to prayer have become common for you and we are confident that the Lord will give you peace and a clear understanding of Ethan's treatment path. Do not doubt the still, small voice behind you. The verses in Isaiah 30:18-21 are a blessing. God doesn't always call out loud to lead us on. Often, we take that step of faith first "And thine ears shall hear a word behind thee, saying, This is the way, walk ye in it, when ye turn to the right hand, and when ye turn to the left." Is. 30:21 We are praying for you. Love the Hunts

Anonymous said...

kasey adam and ethan our prayers with you every day. we still believe in miracles we pray for all of you every day. there is nothing more stronger.When jesus was on this earth before our life
on this earth he healed many many sick.We believe that with his pity he had for the people at that time.
putting trust in jesus now. HE hears our prayers and the loving pity and healing will come to ethan .love nana and poppy

Mrs. MK said...

many prayers for this, and any other tough decisions ahead!

Kim said...

Kasey, Adam and Ethan - Peace and strength be with you. you are all in my thoughts and prayers.

The Drama Mama said...

Thinking of and praying for you guys right now! I will continue to pray all day...and I pray you feel His love and touch throughout the day!

Megan said...

We have been praying all week about this Boston appointment. We will continue to pray all day today that you and Adam walk out with confidence about which path you will take and be at peace with it. We will pray for Ethan of course. God be with you all today and every minute of every day forward. I have strong faith God will give us a miracle for Ethan. "People make plans in their minds, but only the Lord can make them come true. Depend on the Lord in whatever you do, and your plas will succeed." Proverbs 16:1,3
Love,
Megan

Anonymous said...

Praying for you as even now you are in Boston. He will guide your path!

Anonymous said...

The day that you've been waiting for is finally here. Praise the Lord! I'm praying for you as you meet with the doctor(s). May God grant you wisdom and clarity of thought throughout the whole day! (and little Ethan the patience he needs...) :)

Continually praying,
Jennifer

Anonymous said...

Kasey, Adam and little Ethan,

I am in Florida but receive updates from my father who is a pastor in CT about your situation. As I read the prayer request today I am sitting her just crying for you and what you're going through. I have a "little man" as well, although he's 5 now and I just empathize with what you are feeling as a mother. I am also amazed and humbled by your faith as you go through this. I know God is in control of everything and that His ways are not our ways, but it's easier said than done at times. I appreciate your honesty and candor regarding your feelings and questions about what you're going through. God is our heavenly father but also our "daddy" and I think He wants us to come to Him as His child and express when we don't understand things or when we're struggling. I appreciate you sharing that with us. I have prayed for you each time I've seen updates. Not only for your little boy to be made whole by the Great Physician, but that you would continue to be a testimony to both the lost and saved regarding the Lord as you go through this trial.
God Bless...

Anonymous said...

Kasey and Adam,

We are praying for you today as you speak with the doctors in Boston! I pray God give you wisdom and that Ethan will do well today! We are continually praying for you here in Birmingham! We will give our church an update tonight in prayer meeting so that they can pray specifically as well!
Love,
The Lang Family

Amy said...

I found your blog several weeks ago and have been following your story. Just wanted you to know that I am praying for your trip today and for God's wisdom for your decisions. I also wanted to let you know that after moving two years ago, your blog reminded me to update my contact info. with the Bone Marrow registry. Praying.

Judy said...

Adam and Kasey,
Just wanted you to know I'm praying your day in Boston went well. I can only imagine what your family is going thru. I will be praying for the decisions you will need to make concering Ethan. May God reach out and Bless your family in a special way thru all this. Love in Christ,
Judy in N.C.

The Drama Mama said...

PRAYING FOR YOU ALL THIS VERY MINUTE!!