Tuesday, July 8, 2008

Thank you for praying for us yesterday. To say that I have a peace about the decision with Ethan's spleen would be a half-truth. Since yesterday I've felt like the wind has been knocked out of me several times. I guess I was living in denial about how I truly felt about Ethan losing his spleen. I kept telling myself and the doctors that I didn't care if he had to live his life without a spleen, my concern was more about the surgery itself. Well, when the surgeon answered our questions yesterday with such ease and clarity - saying that they have to take spleens out of babies often enough due to sickle cell and other diseases and that if everything went well, the recovery would be 5 to 7 days - I found myself asking more questions in the hope that I could talk him out of believing that the surgery wasn't more complicated than he was explaining.

I found myself dying a little on the inside as I saw Adam have such certainty right away that this was what we needed to do for Ethan, and yet my feelings were so completely confused and raw. I was almost angry that the surgeon didn't advise us against it. Deep down, I think I was assuming that was going to be the case.... that we'd hear that the surgery was very dangerous and that we shouldn't do it unless it was absolutely crucial that we did. But he didn't. He described the surgery itself to be quite easy - as far as a surgeon is concerned - much different from a mommy's perspective I assure you!

His descriptions included stuff like, Ethan won't be able to eat for about 4 days or so due to his intestines and stomach's initial inability to digest... therefore he will be "fed" through his central line with the necessary nutrients going through his veins (Though I knew we'd be faced with that scenario once we got to Boston for the transplant, I wasn't ready to deal with that just yet. I started to cry as I imagined not being able to comfort him with a bottle when he "felt" hungry and not being able to keep feeding him his "baby foods" like we've just started and that he likes so much). He will have a tube through his nose to assist with breathing and to aid in keeping him from vomiting. He will also have a drainage tube coming out of his side to ensure that the pancreas (another organ) wasn't damaged during the surgery and leaking into other areas of his body. They will have to cut into his little belly, starting around the breastbone and ending on the left side of his rib cage.

Aside from the surgery, he further advised (or reminded us) that life without a spleen will be slightly challenging. Ethan will need to be on Penicillin every day for about 7 to 10 years with a re-evaluation after that time. With the hope that the bacteria that causes pneumonia, meningitis, and the like, did not build a resistance to the antibiotic. He will also need antibiotics to prevent bacterial infections of the bloodstream (sepsis). Not to mention the "extra care" he will need to receive with the common cold and other sickness that most kids pick up from school. He further informed us that Ethan will not be able to get the rest of his vaccinations because his body would not be able to withstand them without the aid of a spleen, which of course could leave him vulnerable to those diseases.

Like I said, I had told myself that the surgery was all I was concerned about. But that's not true. My heart is broken right now, knowing what we have to do and hating that we have to do it.

After the consultation, Adam and I each had very different emotions and perspectives. He was relieved that the surgeon felt confident he could do the surgery with mild to no complications and felt that was his answer to prayer that Ethan's spleen should come out. I, on the other hand, was way more emotional about it. I fell a part. I felt upset, sad, disappointed. Everything hit me once again. The reality of our situation. When we're at home with Ethan, it's easy for me to push aside how "dark" our life is right now. But when we have to face a decision like this, the reality of just how tough of all of this really is - is like a blow to my chest... leaving me searching and desperately grasping for air. Leaving me weak. Tired. An in deep sadness. A sadness unlike any other.

After the consultation with the surgeon I called the doctor in Boston who will be doing Ethan's transplant. I left a message for her to call me back and much to my surprise, late last night, she did. I shared with her how torn I was about whether or not to remove Ethan's spleen and asked her one last time for her professional opinion. The truth is, with Ethan's type of cancer, it is so extremely rare that there is not enough evidence one way or another about a lot of the treatment he gets. However, when I cornered her for a more specific answer, she told me that if she had to say yes or no to removing it, she'd have to say yes. In her studying the situation against other JMML cases, when you do a bone marrow transplant, it's not necessary for the spleen to be removed. However, there is no such proof with a cord blood transplant. And what they do know, is that with a cord blood transplant it takes longer (over a month) for the donor's blood to begin growing in the patient's body.... and the spleen has a tendency to soak up all the new cells, thus making it much longer (and more dangerous for Ethan's life) if the spleen isn't removed in the first place. They at times make the decision in the middle of the transplant to remove the spleen if it's interfering with the transplant, but at that point the surgery is much more dangerous.

Which brings me back to what I said initially. I know what we need to do. He needs to have the spleen removed. That much I am at "peace" with. But to say that I didn't cry myself to sleep last night, or that I haven't cried several hundred tears this morning... well, it's just very hard. It's just all so very hard. I do trust the Lord. I do. But even Jesus, knowing His own power and the outcome that power would bring, wept when He learned of Lazarus....

Be patient with me, Lord. I am trying.... but this is not easy for me right now.


Anonymous said...

Oh Kasey,

I want to give you a huge hug! I have been watching for your post/decision today and am now in tears. I can not begin to imagine how you are feeling and what the next few months will bring. You are facing one of the biggest challenges as a mommy and handling with such strength and grace. We will continue our daily prayers for "baby Ethan", Adam and a special prayer for Ethan's Mommy.

Stay strong,

Erin said...

Washington Irving quote:
“There is a sacredness in tears. They are not the mark of weakness, but of power. They speak more eloquently than ten thousand tongues. They are messengers of overwhelming grief...and unspeakable love.”

Kasey, I'm a friend of Adam's from work and when I heard about all that you and Ethan are going through, Adam shared your blog with me. I've been silently following it for a while now, but just want you to know that your love is your strength, and it's inspiring. My family is praying for yours.

Anonymous said...

I can't even begin to imagine the struggle you're going thru. My prayer's are with you and Adam as you make each new decision for Ethan's well-being.

Lean on your husband's confidence. Let him carry you thru this, knowing he's guided by the Holy Spirit within him.

Continually Praying,

Mom K said...

You are not alone. Your entire family desires this need of comfort. Psalms 46: 1-3 says "God is our refuge and strength, a very present help in trouble.

Therefore will not we fear, though the earth be removed, and though the mountains be carried into the midst of the sea;

Though the waters thereof roar and be troubled, though the mountains shake with the swelling thereof."

I can't seem to get the song Curt taught us that states, "We are never alone, God is with us.." out of my mind. I hope God gives you an extra dose of love & grace today.
Mom K

Hollie said...

Oh, Kasey...I can't begin to imagine or even say anything to make it a little less painful. But know that I am on my knees praying for you! All of the specifics that you spoke about in your post, I will be praying about (the surgery itself, Ethan feeling comforted without a bottle, etc.) You guys are contantly on my mind!

Kari said...

Sis, I saw a double rainbow the other day and thought of you. I prayed that God would also allow you to see one so that you would be reminded of His love and faithfulness.

Ethan has been so strong during these past few months, because you and Adam's faith has been so strong. God has been with all three of you every second of every day. He hasn't brought Ethan this far only to leave him to fend for himself. He has GREAT plans for all of you. I can't begin to imagine how hard it is to send your 5 month old son to surgery to have an organ permanently removed. But think....who created that spleen? God did. God has the power to protect Ethan more than his spleen ever did. Remember...God is The Great Physician/Surgeon/Oncologist...you name it!! Ethan may need to undergo this surgery. But Ethan's life isn't in the surgeons' hands.....he has been and always will be in God's hands. Don't lose heart now, God has been preparing you and Adam for this journey. It's going to be long and there may be bumps along the way, but Your Heavenly Father will be by your's, Adam's, and Ethan's side carrying you when you'll need him most.

Isaiah 40:28
Do you not know? Have you not heard? The LORD is the everlasting God, the Creator of the ends of the earth. He will not grow tired or weary, and his understanding no one can fathom.

Loving you and praying always...

Kasey's Mom and Dad (ethan's mema and pepa) said...

Kasey, we love you, Adam and Ethan so very much and we know that God has the best plan for Ethan's life. Just remember, look at all of this as good for Ethan's healing and it's a blessing that the doctors are able to do all that they have been able to in order to help Ethan so much. God's protection is with him and you always. We are so proud of you and Adam.

Janelle & Ella said...

Kasey, I am SO sorry! I am so heartbroken for you and this entire situation. I am already praying. You and Ethan are in my thoughts daily.

Carrie Comstock said...

Oh, Kasey. My mother's heart is aching for you. I am so, so sorry. I know each new step of this journey is a struggle. So hard to lift your foot to take the next step. Confronted with all of this new information is overwhelming and difficult. I wish I could give you a big hug right now. I am just so sorry.

Praying for you all each and every day...

Anonymous said...

I wish I could hug you right now. My heart is broken for all you are going through. You know our Lord will see you all through this. Sam, Tiff and I love you all sooo much and we will keep praying for you. Psalm 4:3 "But know that the Lord hath set apart him that is godly for himself: the Lord will hear when I call unto him."
Chris, Sam & Tiff

Linsey said...

Kasey, grieve the losses that you are encountering. Grieve the loss of feeding him for the 4 days. Grieve the loss of having a care-free toddler, always frightened of the cold. Grieve the losses you feel, both big and small as they come.

With all those losses will come many more joys, milestones, smiles, giggles and memories. I love you and will try to call soon. I miss you!

Anonymous said...

Oh, Kasey-
My eyes are filled with tears. I have been keeping up with the blog but just wanted to write and let you know you and Ethan are still in my thoughts and prayers. At least we now know the next step ya'll need to take to start the recovery process! You are getting closer everyday! Don't give up! I send a big hug from Texas!

Amber (Spradling)King

Sara said...

Dear Kasey, As I look at my four precious little boys, I think of you and your adorable little Ethan. Joshua 1 says "Be strong and of good courage, be not afraid, neither be thou dismayed - for the Lord Thy God is with you withersoever thou goest." Your strength has been such a blessing and encouragement to me. I can't imagine how overwhelmed you feel at times; I am so thankful that you have a loving husband who is leaning on the Lord with you. Trust him, God will give you peace about the decisions ahead - it might just come through Adam's strength and confidence in the Lord. I will be praying especially hard for you tonight. In Christ, Sara

Lenore said...

Oh my Kasey-Bell,

My heart aches for you and Adam and Ethan. I wish I had a magic wand to make Ethan all better right this minute! But you already who has all of the magic you need. Stay strong, I hope you, Adam and Ethan can feel all of the love and prayer that goes out to you every day.
Love you,

Elizabeth & Family said...

oh kasey, my eyes are filled with tears. Kasey, I am SO sorry! I am so heartbroken for you and this entire situation. I can not begin to imagine how you are feeling,and struggle you're going thru. I wish i could give you a Big Big Hug right now. You are not alone,Don't give up! You guys are contantly on my mind! Ethan has been so strong during these past few mouths,Because GOD has been with all three of you every second of everyday. You and Ethan are still in my thoughts and prayers. Sending all three of you A HUGE HUG.
Elizabeth & Family

Sharon said...


I'm getting updated on your blogs right now and I wanted to share with you that yes, cord blood transplants have a longer engrafting period, AJ engrafted way earlier than they had thought. If you are interested, I'd be more than happy to look back at our journal entries to tell you what day. I do remember sharing with you that our bone marrow transplant coordinator told me she'd be surprised as all heck if he didn't engraft by day +14 because of the cell dose he received. Maybe you can ask to see if the cell dose has something to do with the engrafting period? Our oncologist always told us it's like 3 weeks to a month for engraftment however our coordinator told us different. On the flip side, I have seen cord blood transplants that never engrafted (I know of 2 patients) but the ones I do know personally at our hospital, engrafted earlier than the 3 weeks. I just wanted to give you hope!!!