Friday, May 2, 2008

No Fear

Wasn't that the slogan of Nike or Reebok or some sort of logo at one time? No Fear. I don't think there is anything much harder in a person's life than trying to live with "no fear". I can't seem to make it one day... maybe not even a couple of hours... without fear of SOMETHING creeping in. And I'm assuming it's a struggle for most people because how many times does Jesus say in the Bible "Have no fear..." "Fear not"... "Be not afraid"... and so on. It's apparently something we're not meant to do. But we do it. We almost can't help ourselves. NO FEAR is a wonderful concept (and even a command), but I've not been able to master it. Especially not today.

As I waited in the pediatric oncology waiting room this morning for Ethan's appointment, I saw another family that was also waiting there. I didn't see a child with them, so I assumed she was already in the back being seen by a doctor. Ethan began to stir, so I took him out of his car seat and began to feed him. As he was casually taking his bottle, my eyes kept wandering over to the two ladies who were waiting. They were expression-less. They looked off into the distance with such an empty look on their faces. They'd occasionally say something to each other, but the lack of expression never changed. It was as if the wind had been knocked out of them and they were trying to mentally and physically re-group, but couldn't. I knew that feeling. I sat there and watched them, and I understood exactly what they were feeling and thinking without even asking or listening to them. I knew.

Within a few minutes, a young girl walked out of the office with her parents. They all walked over to the two ladies I had been watching. The parents of the girl looked exactly as the two ladies did. The four of them sat there, while the girl (I'm assuming about 10 years old) played. No one said anything to each other. They didn't have to. Their bodies and faces said everything. My daughter/niece has cancer...why us... why her. That's what they were saying without saying it. I'm sure that's what they were trying to comprehend, and yet feeling overwhelmed because they couldn't comprehend it. I understood. I completely understood. I felt an anger I hadn't yet felt throughout this process. Picture a pot of water on a hot stove. You know the bubbles that start to build up just below the surface of the water, right before it starts to boil? That's how I felt. And I couldn't stop it. No matter how much I wanted to turn off "the stove", the water in my being continued to simmer vigorously.... As a tear started to swell up in my eyes, I realized that I had let the bottle slip out of Ethan's mouth. As I repositioned him, the nurse called Ethan's name. As I picked up Ethan and my bag, the nurse grabbed his car seat. She was extremely pleasant, which was very nice, because I was looking for any reason to stay in my bad mood... and an unfriendly nurse would have helped me justify being rude. Of course, I wasn't rude. I smiled right back to her and carried on a conversation as if nothing was wrong while she took Ethan's blood from the tubes in his chest. But when she left... I realized the slow simmering thoughts were still there.

My son has cancer.

I just kept saying it over and over in my mind.... with different emphasis on each word every time I repeated.

MY son has cancer.

My SON has cancer.

My son HAS cancer.

My son has CANCER!

And not just any cancer. One of the worst kinds. The kind that even the best of specialists all over the country haven't seen very much of. The kind that has so much conflicting information out there that there really is no definitive solution/cure/treatment because not enough research has been done due to its being so rare! Before I could let out a scream, Ethan started crying. He needed to burp. As I was burping him, the nurse came back. We were free to go, and she'd call me later today with the results of his blood counts. She was beyond friendly. Probably the nicest nurse (person!) I'd ever met. Ethan kept smiling at her. She kept commenting on how handsome he was and how precious his smile was. I had to agree with her. She commented on his big blue eyes... I said, he gets them from his dad. She asked to hold him, and then commented on how cuddly he was. I had to agree again. He is a very lovable baby. She calmed me down... I'm a master at facades, so I assure you she didn't know I needed it. But I did. I needed to be rescued from the simmering water in which I was slowly starting to drown.

As we left the hospital, I started thinking about fear. Fear is a mental death trap. My thoughts strayed from the fear of the possibility that Ethan's treatment might not be successful to the fear of the possibility that what if he did go into remission one day, only to have the cancer return when he was 3, 10, 16, 21, or even 35 years old. I don't want him taken away from us now, let alone in a few years.

It all started last night... I knew I shouldn't have started to "learn" more about JMML. I have purposefully not read the information that the hospital gave us about childhood leukemia. And I had purposefully not "googled" JMML specifically. Until last night... and let me tell you that nothing I read was helpful, insightful, or encouraging. Nope. Everything I read kept sinking me lower and lower into a pit of despair. Now remember, I said that everything out there about JMML contradicts something else that's out there about JMML. And, of course, I happened to stumble upon all of the depressing facts of just how untreatable and severe a JMML diagnosis really is. Thus the reasoning behind my sorrow today.

Fear. It is crippling. And even now, as I try to overcome my fears with faith and trust that the Lord's going to answer my (our!) prayers.... I'm stuck. I know there are many people out there who pray for a miracle or healing in their loved ones. And I'm quite sure that they pray, believing in complete faith that it will happen... but sometimes, it doesn't. How do you reconcile the fear of not getting the answer you hope for, with trying to have the faith that you will? It's a puzzling back and forth of the mind.

All I can come to grips with is the answer that my very wise husband gave me last night. We can have faith that God is going to take care of us regardless of what takes place in our lives... and we can pray.

Several times in the Bible, it appears that God had his mind set on something, and then changed it because of prayer (2 Kings 20:1-5, Genesis 18:26-33). I don't know the will of God in Ethan's life. I don't know the will of God in mine and Adam's lives. But I do know that I can pray. I can cry out to the Lord that mine and your prayers for a miracle healing be answered. Not just until Ethan is 8, 18, 38 or 58... but healed wholly and completely of this disease. That he may have a long and blessed life here on earth.

It's hard... but I can't give up that hope. Please don't give up either. Keep praying. I've never felt so connected to a body of believers as I have over the last several weeks. Together we are a united front before the throne of God... collectively kneeling and asking for the same thing.

Heal my baby boy.... Heal my baby boy.


Megan said...

"I have good plans for you, not plans to hurt you. I will give you hope and a good future. Then you will call my name. You will come to me and pray to me and I will listen to you. You will search for me. And when you search for me with all your heart, you will find me!" Jeremiah 29:11-13
Allow yourself to have bad days but rest in the word of God to pull you out of those times. The devil wants you to give up hope and to struggle, don't let him win. God wants all our worries, he will carry it all for us. You and Adam are going through something most of us can not imagine and I am so sorry. I agree with what you have said in past blogs about this happening for a purpose and when I read your blog I can't help but to think of Job, you remind me of him. You guys have been tossed a lot of heavy and scary news about your precious son but the faith you have kept is truly glorifying our God. God is in control. He is taking such good care of Ethan and he will continue to do his work. God says ask and we shall recieve, praying is the best thing for all of us to do. We are stonger in numbers and numbers we have so be at peace knowing that.
We pray for you and Adam as well. It is truly a honor being apart of this miracle in the making. Thank you.
Washington State

Honea Household said...

I am praying for you sweet sister in Christ. You and Ethan. I cannot imagine the emotion roller coaster you ride daily, but I am lifting you up to our Comforter. The Healer. Our Provider.

Anonymous said...

Dear Kasey,

I had my own stretch of fear to fight through in the wee hours of the morning this morning... Maybe it was a tool the Lord used so I would feel more deeply for you when I read your blog... I don't know. I'd like to think there was some purpose for it though. :)

I have no words of wisdom because I don't think I "overcame" that fear in that moment, just finally got "overcome" by sleep instead. However, I knew it was a spiritual battle for control over my thoughts, so over and over I kept praying, "whatsoever things are true, ...honest, ...just, ...pure, ...lovely, ...of good report; ...think on these things."

No Fear this morning... Renewed every morning... One morning at a time.

Continually praying,

Anonymous said...

His mercies are new every morning! i don't have every answer to everything you are going thru but i do know that God will perform His great will in your lives. He knows what is best in your life, in Ethan's life, in Adam's life. and sometimes we don't understand or even agree with the situation allowed or the outcome we fear. i know it is easier for me to say these things because i'm not going thru this terrible sickness, but i do know that God loves you and He loves Ethan more than you or Adam do. And He only wants what is best. the best might not be what we want. but all we can do is make sure we are in the center of God's will and know He is incontrol. Fear is so easy to get trapped in. i myself have battles with fear. but i also know that fear is not from God. so if it is not from God it is from Satan. I will pray that God will destroy the demons that are attacking you in the form of fear. God bless you and your family for who you are and who you are becoming. we are still praying for a miracle and His perfect will.

Linsey said...

Kasey, these days will come and these days will pass. You stay off that roller-coaster as much as you can. Let your body feel the emotions it needs to. Maybe you should get into kick boxing to get rid of the anger.

I warned you about the google, google isn't God. No matter what you read, God has his own plan. I am sorry for the crappy day, hang in there.

Mom K said...

Psalm 34:4 "I sought the LORD, and he heard me, and delivered me from all my fears." I am so greatful that we have a Saviour that hears us, and that we are never alone. You are never alone in that waiting room, our hearts and thoughts are always with you through out the day.
Mom K

Jennifer Keifer said...

I'm sitting here sobbing. Your posts are so beautifully poignant - they capture the unimaginable emotions you are struggling with, and yet in faith, always point to a godly trust in the Lord. We love you and your precious Ethan, and pray constantly for you.

Is 41:10 So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.

Much love to your dear little family.

Kate said...


"No Fear" seems so hard to accomplish. But you have to realize who is on your side. We cannot even grasp the concept of how great He is...because He is SO powerful that it is beyond our understanding.

Pray for understanding. Pray for instructions on what to do next. Pray for comfort. God is with Ethan. Your baby is not worried until he begins to feel and understand your tension. Believe that your God has the power to give you understanding, instruction, and comfort. "Ask and you shall receive" did not mean that you could tell God to perform miracles.

You and your husband need to be closer to God than ever before. Because He will carry you through this as though you had that kind of courage all along. If you feel like you cannot figure out what God is trying to tell you, ask for Him to send someone of faith to tell you.

I've been through my own struggle similar to yours. And, at one time, I begged for two nights in a row for Him to send someone to clarify what He was trying to tell me (because I did not understand). I answered a knock at my door at 9AM the next morning, and there were two ladies asking me, "Have you ever wondered..." and proceded to tell me exactly what I had asked God to clarify to me.

By all means, keep praying that God's plan IS to HEAL until He reveals to you that He has other plans. But "No Fear" is so much easier to accomplish when you realize that no matter the outcome, God has it all under control. He wants you to have peace. Please allow yourself to have the peace that surpasses all understanding (Philippians 4:7).

For devotion, go to Allan Turner's Commentary on Philippians
and skip down to verses #6 and #7.

I hope this helps. My prayers are with you.

Kate in Florida

P.S. My nephews (Joshua, Jacob, and Joseph) attend your school and their mother sent your prayer request to me. Know that God is being flooded with requests for you and your family's well-being right now.

Anonymous said...

Dear Kasey,Adam,Ethan:

I have been faithfully reading your blog everyday. I know you have heard this over and over but you truly are a source of inspiration.And we truly do forget to relish the simple things. First and foremost our salvation in God and where we would be without that.His goodness and mercy. My ladies adult fellowship class has been lifting you up in prayer along with our Bible study class, at Wethersfield Evang Free Church.And yes you still have a sense of humor!!!! I never knew you very well but always looked at Adam as a young man of integrity.Will continue to pray for your family as you continue through this ordeal.

"In his Love"
Debbie Sartwell

Anonymous said...

My name is Sandra and I found out about Ethan through an online Bible study in which your friend, Alicia B. is a member. Ethan is on our prayer list, and I've started praying for him daily, whenever he comes to my mind. I was diagnosed with ovarian cancer about a year ago.
So I feel connected with Baby Ethan. It's only through God's grace that Im feeling great today, have my own hair (just saw my hairdresser yesterday!),and am able to get up with plenty of energy and go to work each day. The literature I read said that ovarioan cancer usually reoccurs, but my prognosis is pretty encouraging (stage 2c, not in lymph nodes, was able to get through the aggressive chemo put directly into my abdomen--God graciously led me through that without the sickness most experience!)
So I've experienced God's grace & mercy in a whole different way than I ever had before. I never thought I'd be so excited to wake up in the mornings and not mind getting ready for school!! I truly know what you mean by enjoying the simple pleasures of life and noticing things in a whole different way.
Please know that I will continue to pray for Baby Ethan, you, and your husband. Ethan is so adorable-I wish I could hug him. (I have 5 grandchildren and another grandson will be here May 23.) So please hug him for me.

Elaine Weber said...

Kasey, Adam and Ethan, When I heard what you are all going through I just had to reach out to you to let you know my thoughts and prayers are also with you. Sara Galucchi emailed me the blog site when I was asking about how Ethan was doing.Thank God you have such a strong faith and family community around you all. You are so human and humble in your accounts of what you are experiencing. I'm sure that in sharing your suffering you are touching and calling more people than you could ever imagine. My heart and prayers are with you and I know great blessings are being showered on all of you.
Elaine Weber, School Nurse, ECA

Anonymous said...

You don't know me but my husband Rob Stevens went to highschool, church and college with Adam. I knew Adam at college. I attend Northside Baptist church in Charlotte and our entire Sunday school department is upholding you and your family in our prayers. Your blog has brought me to tears and to my knees to pray for Ethan. I have 2 of my own and can't even imagine the heartache you must feel. A very precious verse came to mind as I read your blog on fear - something I too struggle daily with- "God does not give us the spirit of fear... but of POWER and of LOVE and of a STRONG MIND" It's amazing how many verses there are on fear - God knows we will struggle with it and has equiped us with the best advice - His Word. Cling to it Kasey - it has the answers - it always does. We will fervently pray for your precious baby.
Breanne Stevens

Anonymous said...

Kasey and Adam,

regarding ...

"Please don't give up either. Keep praying."

we will not give up and we will keep praying.

Matt Minahan
Northside Baptist Church
North Charleston, SC

Anonymous said...

I don't really know you guys, but heard about you and your blog through a mutual friend. I have been reading your posts and praying for you all for a couple weeks now.
If you have time, check out this blog:
read today's post and also her posts from a year ago when she didn't know if her baby would live or not. I pray that it will encourage and strength you to see where God has taken others who have been in similar circumstances. Her blog posts encourage, challenge, and convict me almost every day and I'm not even in the same place in life. As I was reading her post today, I just couldn't stop thinking about you and that I should give you the link.
God bless and I'll continue praying for you all.

Anonymous said...

It was so encouraging to see you at the baby shower yesterday, and then to have Adam at church this morning. Please remember that, while you are very personally going through this trial, we are all learning and praying and trusting and going through it with you. The Lord has been glorified in this and we know that He will continue to be as we all grow in our prayer lives and in our faith. We love you! We are thankful for you and for your little arrow!

Lo, children are an heritage of the LORD: and the fruit of the womb is his reward. As arrows are in the hand of a mighty man; so are children of the youth. Happy is the man that hath his quiver full of them: they shall not be ashamed, but they shall speak with the enemies in the gate. Love, the Hunts

Randi said...

Know that we continue to pray with you for Ethan to be wholly healed of this disease.

Cade and Coby know all about sweet Ethan. I have shared with them information and pictures. Cade is my compassionate, tenderhearted child whose eyes well up with tears when he prays for Ethan. Coby is my prayer warrior. He is more commanding in his prayers. He prays it; therefore, God will see that it is answered. :) We all long for the day when Ethan is healed.

We love you.
Randi, Brian, Cade, and Coby

Marge said...

Dear Kasey,
I just want to say even though I don’t know you, not one that reads what you share of yourself of what you and Adam are going though could ever say they don’t know you.

God has brought you through this trail so far and he said he will not leave you so you know he won’t let you down.

Your darling little Ethan is such a beautiful little baby boy. I just believe that the lord will heal him.

Well, know I’m praying for all 3 of you.

Because He Lives

Anonymous said...

Dear Kasey;
Fear is a very real and powerful thing. Being in the medical field I can tell you we warn our patients not to google anything because it is always worse case scenarios. It is not about Ethan but other childrens expierences. Fear not we are all praying for Ethan and the power of prayer is unmeasurable and much stronger than fear itself.
Love always
The Chapdelaines

Ray Nothstine said...

Ethan is so cute and handsome. I am glad you are with him to shower him with love and affection. I will be praying for all of you.

Jesus loves the little children.

Anonymous said...

Through the Lord's mercies we are not consumed, because His compassions FAIL NOT.
They are NEW EVERY MORNING; GREAT is Your faithfulness.

Praying for your little guy; praying for you and your husband.

Anonymous said...


I wanted you to know that I give thanks for you, Adam and Ethan each and every day. A friend of mine shared your blog with me last week and I just want to thank you for opening your heart, life and home to those of us who read your blog and who you absolutley teach and minister to each day as you write down what you are going through.

You and your little family are a great example of God's love and caring if we just trust in Him and give our lives to Him.

You are an inspiration to me and so is little Ethan, you say you think God has a plan for him. You are right He does, but it isn't for the future, it is already happening. When I think of how brave this beautiful little boy is and how his smile lights up the lives of every nurse, doctor, reader of your blog and most of all you and Adam, Ethan is already living the life God has for him.

He is the bravest of souls and whenever I think I am having a bad day, I am remined about Ethan's day(s) and I am humbled. I immediately give thanks for his example and pray that God will forgive me for not having the faith that this beautiful angel (that blesses not only you but those of us who have grown to know him thourgh you)represents.

You are right Kasey, he is an amazing gift and I thank first you for reminding me how precious not only each day, but each moment is and I thank Adam for being such wonderful Dad, I thank Ethan for being such a wonderful example of how we are made in God's loving image. Ethan radiates God's love in his eyes and smile.

I also thank God for the three of you! God not only has an incredible plan for Ethan, but for you and Adam as well.

Thank you for sharing with me and for helping me realize my shortcomings.

You're right about Fear and how we all experience it. Without fear Kasey, we wouldn't understand Faith. So never feel guilty for feeling it, but I pray that God will lift you up to a place where you can see the difference and it is up to you to choose Faith, which you seem to do with such a beautiful heart.

Ethan has been blessed to have you and Adam as parents as you are blessed to have him as your son.

You are a gift to one another and I will continue to pray for your strength and faith.

You are all three amazing examples, thank you for being vulnerable for all of us so that we might learn from you.

With God's love,

Anonymous said...

Like so many others have said, the only words of comfort come from His word. One of my favorites when I am afraid is, "Have I not commanded you? Be strong and courageous. Do not be terrified; do not be discouraged, for the LORD your God will be with you wherever you go." Joshua 1:9 There are women praying for you in Springfield, Missouri.

Anonymous said...

I work in the San Diego sales office for The Hartford. I just wanted to let you and Adam know that my wife and I (and her prayer chains) will continue to pray for Ethan's miracle healing. Your faith is a great encouragement to me.

May God bless you with another miracle.

Rigo Ortiz

Anonymous said...

Hi Kasey!
I am praying with you and Adam for Ethan's healing,... our whole church is praying for you. Something I have noticed as I read your are a gifted, and talented writer. I am hoping someday in the future you will put together this wonderful blog into a book, what a blessing and an encouragement it will be to those who face similiar trials. You are a wonderful testimony of the Lord's mercy and grace. Thank you for sharing your heart with all of us. You have blessed my life.