Wednesday, June 27, 2012

A God Who Hears, Who Wipes Away My Tears

This morning was peaceful. We woke up expecting a really busy day, but it was mostly a day of waiting. Our tests were not scheduled as early as we'd hoped. It was a sweet time, though. Our day stared off from a visit from a Child Life Specialist who brought Esther a bunch of goodies...she got play dough, a princess tea party set, books, markers, crayons and fun things to color, a puzzle and a memory game.

We got to see our friend, Thomas, and his family. We prayed and chatted for just a little bit. They were ready to head home. When I told her Thomas was coming she said "Yea, I like him." She was shy when they arrived, but after they left she said told me it was fun to see Thomas.


She had a short MRI that was scheduled for 3:45pm and a CT scan for 6pm, so Anthony headed out about 12 or so to get the kids and my nephew to come for a visit. It was good to see the kids...they had lots of questions and thought Esther's bed was pretty cool. Anthony stayed with Esther and I took the kids back down through the hospital with my mom. We checked out the amazing murals on the floor of the main level from the 4th floor, took a trip to the second floor to check out the lego version of Children's Hospital, and then made our way down to the first floor in the glass elevators. This facility is so beautiful and I'm really thankful to be at a hospital just for kids.


When I returned to the floor I saw our oncologist standing outside the door talking with another doctor. It was one of those tunnel vision things from the Wonder Years. I met them at the door and they came in, along with another doctor, to talk with us a little more about Esther's tumor and her bone marrow biopsy.


They have confirmed that it is a neuroblastoma and did find it in her marrow. The bump on her head is not her primary tumor. Neuroblastoma doesn't start in the bones, it starts elsewhere, usually in the abdomen, and often metastasizes in the bones. She has stage IV neuroblastoma. We will have a treatment meeting tomorrow afternoon sometime, but they said that treatment will need to include chemo, surgery, radiation, and bone marrow transplant.


After the doctors left and Esther was peacefully sleeping, we began to read more about what stage IV means and wondering what will the outcome of this whole journey be. Even now as I write, it seems utterly unreal, phenominally painful. As I watched this little girl sleep a peaceful sleep, I wondered how long has this cancer been in her body. She never had any symptoms...most neurblastoma's don't have a symptom until it's already spread. What an ugly disease.


This is so hard and we aren't even to the hard stuff yet. I'm scared. We met with a social worker who was comforting.


Esther's MRI was delayed, but that was a kindness because she was able to rest and they ended up being able to do the MRI and CT back to back. She just had to down an 8oz contrast in 30 min. We made a game out of it and she did well. The MRI was terrifying for her, but since they didn't need images too precise, they rolled her up in a blanket so she couldn't move and just gutted through it. We went straight to the CT scan and had some IV problems that caused her some pain. She wasn't as scared but her cries were enough to about kill you.


This afternoon felt like one blow after another. And one thing about hospitals is why do they have such crappy kleenex? It's like using a tiny piece of sandpaper to wipe away your tears.


We returned to her room, Anthony left to get some food and I was feeling hopeless. I pulled out a stack of cards from Frannie & Lydia's Sunday school classmates and in it was a book with pictures from a lot of the classes wishing Esther health. It has a short phrase under the picture of one of the classes and it says, "Dear Esther" "all of your friends" "are praying for you" "to a God who hears" "You are our sweet friend" "and we can't wait to see you soon" "We love you, from your friends at church."


A glimmer of hope...we have a God who does hear. He hears. And He promises to wipe away every tear...and it will be tender, gentle, with kisses and a loving embrace, not abrasive like the kleenex in this room.


We hung the cards in her room and as I read them to her one by one they said "Esther" and I remembered, her name means victorious. Another kindness in an afternoon filled with sorrow.


The song below is so good. A simply hymn put to a different tone...an honest cry. You can read the author's testimony as to her arrangement of this song. I love watching this video, the honest struggle. The pain in her playing, this dissonance in the chords. This world is harsh but there IS hope. It may be muted, but God is good. It doesn't match up all the time. About 3 minutes in she cries out,

"And I can't understand. And I can't pretend this will be alright in the end. So I'll try my best and lift up my chest to sing about this joy."

 

In the album version she ends with the lyrics to "It is well with my soul"


When peace like a river

Attendeth my way

When sorrows like sea billows roll.

Whatever my lost

Thou has taught me to say

It is well

It is well

With my soul

20 comments:

  1. We are praying. Such a hard journey for you and Esther to walk. Our hearts break for the pain of it all. He is there and will be there and He will stroke your hair as you fall asleep.

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  2. Brian and Carrie HerbolsheimerJune 27, 2012 at 10:41 PM

    Sam and Anthony,
    We were so sad to hear about sweet Esther. We can't even imagine how devistating it is to know your baby is hurting and that you can't just kiss it all away. Please know that we will be keeping thoughts of you and Esther and your family close to our hearts in the days to come.

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  3. Oh, dear family, we are crushed in spirit as we lift you up tonight. We grieve for the pain you're all going through. Reading Psalms 34 and praying for His truth and comfort to pulse through your spirits. "The eyes of the Lord are on the righteous and his ears are attentive to their cry... The Lord is close to the brokenhearted and saves those who are crushed in spirit."

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  4. Sam and Anthony,
    We are heartbroken to hear this news. The anticipated trials ahead must seem overwhelming. Our God does hear and He does give us the strength to trust Him when it doesn't sound like we could. We are all praying for your family and especially for sweet Esther. Hugs and tears from the other side of the world! May the doctors know the right path of treatment and may her body respond! Love, The Snellers

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  5. When man says, " the odds are slim to none & pretty much impossible" know that our God that we serve, Jesus took the stripes on His back & by those stripes we are healed. With GOD, ALL things are possible for those who believe. No Matter How We Feel______ TRUST GOD!
    Praying for you & yours sister. GOD is able!

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  6. My heart breaks for your family. From one twin family to another our prayers are with your family and we know with God all things are possible.

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  7. We sure love you guys. I am so grateful for His role in your lives. Thank you for your sweet openness in this journey. We are praying and hoping to do more for you.

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  8. Elizabeth BarberJune 28, 2012 at 8:08 AM

    I can't read any of these posts without sobbing. Really looking forward to the day when sickness and disease will be no more. He is making all things new. And, for now, he hears. I needed that reminder, too. Thanks for bravely walking this dark, dark path in faith. I keep picturing you saying "Leave now?" to God as Esther asked you. It comforts me to remember that He must know what we don't know...that good will come out of all of this horror. He'll be with you every step of the way, I am certain.

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  9. Dearest sister in Christ,

    I believe I met you once at your church when I visited my sister Charity in September, but I could be wrong. Either way, my heart breaks for you. My mother and I have you on all the prayer lists we know of. I don't know the outcome and I cannot imagine your fear and grief, but you are a blessing because you are still clinging to God. That's all you can do. I once worked with a horribly abused child who asked me where God was when it was happening. I told her I would find out. I searched the scriptures and asked many who were wiser than me. The most satisfying answer I got was from a beloved pastor of mine in Delaware who said, "I don't know, but I do know that before you and this child shake your fist at God and abandon him remember the words of Peter: 'To whom would we go, Lord? You have the words of eternal life." He holds the words of eternal life, beloved. This life is a vapor and I pray your sweet Esther is fully healed, but what a hope we have by serving the God who has the words of eternal life. Sending love, hugs, and prayers from Texas.

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  10. My heart is breaking for you guys and I'm crying as I read this. Praying for your whole family and for healing of your precious Esther. Thank you for sharing your story.
    Christie Murphy

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  11. One thing I have always admired about you guys is your faithfulness and constant reliance on your Savior. You cling to Him and even in your doubt find room to hope. Thank you, for your faith and steadfastness even in this rough storm. God is on the move and has not forgotten you, His beloved. Indeed He hears! Esther is in our prayers and we are urging God to remove this nasty disease from her body. Glory sends her hugs. Thank you for keeping us all updated.

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  12. Agh. I am not sure I have much more to say. We are praying for you, us and whole bunch of SLC people. I squeeze my kids each night and wonder why? Why does there have to be pain and sickness? My heart hurts with you, but my faith is bolstered by yours. I think of these lyrics by Mumford and Sons, "But you are not alone in this
    And you are not alone in this
    As brothers we will stand and we'll hold your hand
    Hold your hand." -Timshel by Mumford.

    Praying, Alyssa

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  13. Dear Sam and Anthony,

    I'm a friend of Chelsea's and have been following Esther's story since she first shared it on Facebook. With every post my heart breaks for you again, but your faith brings Him glory in an amazing way.
    I know that it doesn't lighten the sorrow any, but I can't help but think of the witness that your family is to the staff at Children's. As a medical student who has worked there, I know what a difference it is to have a family like yours, even in the toughest of circumstances. May the Lord bless you, comfort you, and give you peace and strength in this time as we all continue to pray for Esther's healing.
    -Helenka

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  14. Anthony and Sam----how I wish my health would allow me to be there with you. But while my strength is still not there, my spirit and faith are strong. Faith not to blame God but to accept what lies ahead. There will be low days and hi ones. He will always be with you, but if an older person's ear to listen is what you need. I am always here. Surviving illness is not something you can take a vacation from. Treasure the good moments and just get thru the bad. There is no right or wrong way, just one day at a time. In some cases one moment at a time. Give Ester a big hug for me. And wrap your arms around each other. Above all, think positive thoughts. Love, Aunt Melody

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  15. Sam and Anthony,

    I just openly weeped while I read these blog entries. Your faith is inspiring to me in this dark dark time. Even more inspiring is your daughter. I think it is beautiful that she is named Esther, after my personal favorite Biblical woman. So brave and courageous. She already reflects the character of her namesake. Your Esther was designed for such a time as this to be an inspiration to believers everywhere. She is my hero for being so young and enduring so much. I know God has a beautiful plan for her life and I will watch and be praying for her. I cannot even imagine your pain as you watch such a sweet little girl experience such physical pain in her body. I will be praying for you two. I am looking forward to helping in any way if there is a way I can help. I may not know you that well but you are my church family and I am here whenever you need me. I listened to this song yesterday and while reading your blog I thought it might offer some encouragement to you. Song: (http://www.youtube.com/watch?v=AmEBDupAMOo) Please keep us updated and tell us if there is any way we can help.
    Love, your sister in Christ,

    Amy Findley

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  16. Sam,
    We are continuously lifting you all up in prayer. A friend of mine who lives in Georgia shared with me today that there is a little girl in Georgia who has been battling stage 4 neuroblastoma. Her name is Lily Anderson and apparently she and her mom are both amazing. She has a non- profit. And actually sang the national anthem at a Braves game:). Anyway, she has a facebook page if you're interested in connecting with her. Please let me know if you need anything at all- meals, a play date for the kids, a hug, etc. and please know we will continue praying as well. Prayers, love, and hugs are with you and your incredible family and brave little girl!

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  17. Gary and JeralynJune 28, 2012 at 7:42 PM

    Anthony and Sam...
    I was at Wal-Mart tonight and I had friends stop me to tell me they are praying for all of you. They don't know you...yet they are touched by this journey you are on and are drawn to prayer. Gary and I love you and we will continue to hold you before His throne.

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  18. Heard about your little girl thru the Simply Charlotte Mason blog. Just wanted to let you know that you're being prayed for.
    You are at a wonderful hospital for cancer. Our youngest Jude (now 3) was diagnosed with glioblastoma at 2 months there at Denver Children's. Their oncology floor nurses are the best, as are their Dr's and social workers. The Neurosurgeons are top notch. Praise the Lord for putting you in such a wonderful hospital area.
    I love Esther's name meaning. Jude's is similar-Jude Victor means praise to the Lord, Victory!

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  19. Sam and Anthony,
    Thank you for sharing your heart and your hurt. So many of us are praying for your whole family. Even though you're scared, you're willing to see God in the little things and choose to believe in Him for the bigger things. We will continue to pray and pour out our hearts to Him in earnest for Esther.

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  20. There was a post on my homeschooling board for your sweet Esther. I'll be praying for her. My Andy (just turned 8 on Monday) was diagnosed with T-cell Acute Lymphoblastic Leukemia on March 31 of this year. It has been such a wild ride and I can really relate to what you wrote in this post. Our God is a healing God and He will carry your through this time. You can read about our journey thus far if you'd like - www.TeamAndyBauska.org

    Melissa

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