Sunday, May 18, 2008

Adjusting

It's always strange the first few days we come back home after staying the hospital for a while. I don't think Ethan is phased by the change... he adapts fairly well to most things at this age. But it take a strange toll on me. I don't know how to describe it so that it would make sense to you, so I won't even try. Besides the weird transitions that take place in my mind and my behavior, I am, however, just really happy any time we're able to come home. I just want to be home... me, Adam and Ethan together in our own comfort zone... I truly long for that constantly... and am thankful we can have small spurts of that time when the 3 of us are all together. No interruptions, no lack of privacy, time to do what normal families do... at home.


I do have some updates for you and some new prayer requests:
  • Ethan did not show any other side effects, aside from his whole rear end situation - and as of last night his little caboose looked sooooo much better (if not completely back to normal)! Thank you so much for praying for those things. No matter what Adam and I have to endure throughout this situation, we just do not want Ethan to suffer with any type of pain. And this time around with chemo proved to cause him no pain or suffering like it did the first time. NO mouth sores, NO swollen eyes, and NO other negative "surprises"! Thank you for your fervent prayers in that matter, and thank you, Lord for answering those prayers and protecting Ethan from pain/harm.
  • Ethan has started spitting up more than usual - he normally doesn't spit up at all. It's always around when he's eating, so he could just be eating more than he really has room for, but be in prayer that it's nothing more serious.

  • We recently found out that there is an allotted amount of money that is set aside for the bone marrow search (not the actual transplant, just the "search"), and if the costs of the search should end up being more than the money that is allotted to pay for it, then the difference is owed by the family. The more complicated the search, the more money it costs. Please be in prayer that the cost of the bone marrow search does not exceed the allotted amount that's been established to pay for it.

  • Be in prayer for us as we go to Boston this week for our consultation. We're not sure the exact day we're leaving, but they've confirmed it will be this week. We've been advised that we will get A LOT of information during this first visit and that most of it will consist of "worst case scenario" situations in regards to Ethan and the transplant. Ethan will be going with us so they can examine him. This will be a very long day, so please be in prayer that Ethan adjusts well to life in his stroller or our laps for the day. Pray he is not extra irritable so that we can focus on what the doctors tell us, and pray that he's able to sleep and/or be content in the stroller and/or car seat for however long we need him to be.

  • Also, in regard to our Boston trip, please pray that Adam and I have the clarity we need to ask all the right questions and gain the much needed understanding of everything that will take place. This may be the one time we have the full attention of the doctors in Boston until transplant, so I want us to take advantage of that in all ways possible.

  • Ethan and I go back to the hospital for an Outpatient Visit tomorrow morning. Please pray that his blood counts are good and we are able to come back home - as opposed to being re-admitted. Also pray that Ethan continues to take his medication well while we are at home.

I know this is a lot of information, but I know you are praying and I appreciate you allowing me the opportunity to give specific requests. If you could say a prayer for me as well, I'd be grateful. I'm feeling especially run down lately, and I need to bounce back.

13 comments:

Hollie said...

Kasey, you know I am praying hard for all of you. I am especially lifting you up, as I know what a week in the hospital can do to a Momma! You are one tough cookie! Praying for renewed energy and strength!

Prayers are being sent up right now for all the request. Praying hard for the entire Boston trip and Ethan's overall health!

Please let us know what day you are going so I can keep praying ALL day long!

I am smiling right now thinking about you all being in your own home! I will pray all of Ethan's numbers are good tomorrow so you can go back home!

Sending lots of love your way!!

ps...I SO understand the strange feeling you have when you get home. It is like you are so thrilled, yet a very weird feeling!

carleigh said...

kasey, we'll be praying for you this week. one little suggestion- if you want it! if you have a baby carrier, or one to borrow, it may save you! that way, if ethan gets antsy in boston, you can strap him to you, and stand there while the doctor is talking to you. mine has saved me so much strife- when they get tired of the stroller, all they want is to be held, and the baby carrier is so easy! you know if i were there, i'd let you borrow mine!

Anonymous said...

Kasey,
Don't forget to take care of your own physical needs during this trying time. You need to make sure you are eating well and getting enough rest, even though the emotional stress you are experiencing can cause loss of appetite and difficulty sleeping. Allow yourself the luxury of a nap - the spiritual/emotional battle you are engaged in takes a physical toll as well. Don't hesitate to take the phone off the hook for a nap if Ethan is sleeping - tell your friends to send you an e-mail if the phone is "busy".
Make sure to set clear limits with visitors - tell them NOT to visit if they are ill, and make everyone wash their hands as soon as they enter the door if they do visit. Don't hesitate to let visitors know if you are tired and need a nap. The people you trust can watch Ethan for you while you get some much needed rest.
We will continue to pray for the Lord's blessings for the health of you family (including Ethan's Mommy and Daddy!!!).
Please let us know if anyone sets up a fund for Ethan's health care expenses. I'm sure there are many people willing to assist and waiting for a call to action if you have a financial need. Your little family is loved by many people who have never even met you, but share a bond in Christ and are joined in prayer for your son.
TAKE CARE OF YOURSELF!! WE ARE PRAYING FOR YOU.......

Anonymous said...

i will be praying specifically for sweet ethan and you and your husband. i'm sure you guys are very run down. (His mercies are new every morning, thank the Lord! ) thank you for the updates. i'm glad that his little bottom is better.
still praying.....
michelle from michigan
(oh ya, i wanted to tell you that we are expecting another baby! )

Anonymous said...

continuing to have all of you in my thoughts and prayers.

Rachel Erin said...

Hi Kasey,

I went to DBU and happened upon your blog through a friend's. I just wanted to let you know that I am praying for Ethan and you and your husband. I can't imagine what you are going through but it seems you know and trust that God is in control. I am praying for a miracle!

Linsey said...

Kasey, can your parents go with you to watch Ethan when he is not being examined in Boston?

FalkFamily said...

Hi Kasey - You don't know me, but I am a friend of a friend, and I wanted to you know you all are in my prayers constantly.

I don't know if this would be helpful, but when a friend of mine was diagnosed with cancer the nurse suggested she bring a small tape recorder to the appointment so she could record it and play it back later. It made things a lot easier because there is just so much information. I think when I was diagnosed, I wish someone had told me that because to me it seemsed like more information than a person could actually remember.

Much love and prayers for health and endurance for all three of you.

Janelle & Ella said...

Kasey, I've already lifted up these specific prayer requests. Thank you for giving us specifics. I love knowing that we are all praying in agreement for the same exact details.
We love you!

Anonymous said...

Kasey and Adam,
This is Mo. Kasey you probably don't know me even though I think I met you once. Adam knows me all too well. Mich told me about this blog a few weeks ago and I have been reading it every couple of days. wow! I can't even imagine what you are going through, but I must say that just reading the blog and how much you both rely on the Lord really encourages me. I know that I am supposed to say something to you encouraging and uplifting but all I can think of is how much you both are relying and trusting in the Lord. You are such a huge rebuke to me. I have just, within the past few days, started to pray for you 3 consistently. I will try to continue to do so. Thank You for being a testimony to all of us reading this blog. Adam, I miss you and hope you still get out to play ball every now and again. Don't let that sweet jumper go to waste. ;) Later. Mo

Natalie Ezelle said...

Kasey,

Thank you for being specific in your requests. I love knowing exactly how to pray for the specifics of your days. We are praying for your new added requests. May God just allow the whole Boston trip to go smoothly!

Love you!
Nat

Megan said...

Please rest knowing we pray for you and Adam as well for Ethan every single day and night. Thank you for the specifics so we can ask God for exactly what we need him to do for Ethan and you guys. Please let us know if we can make donations to the cost, I don't want finances worrying you all, you need all your energy to go towards Coy. Enjoy the comforts of home and smell of your sheets. I know hospitals are not comfy. Give Ethan kisses and hugs for us.
God Bless you all!
Megan

Bryana said...

Hey Kasey! I'm glad you get to have breaks to go home! I bet it is so refreshing! Are thoughts and prayers are with you as you head to Boston some time this week!Don't forget the Great Physician is on your side, I don't know much about this cancer but Whatever the worst case scenarios are don't let yourself get discouraged! You have Hundreds of prayer warriors and God on your side! Keep holding on! And we cant wait to see you and Ethan again! Bryana