Sunday, February 12, 2012

Rhabdomyosarcoma

This is the word that has officially changed my life. Rhabdomyosarcoma... There I said it. Clayton, my precious 6 year old son, has been diagnosed with this type of sarcoma. We are scared...terrified to be more exact, and just numb. At this point I am unwilling to make my precious a Caring Bridge site. Unless you have been in my shoes, you can't understand why that is difficult. We will see what time brings, but it is my prayer that we will not need one.

Because we have so many precious and dear people who love us and have agreed to pray fervently with us, I've decided to make this blog www.ClaytonWins.blogspot.com for you all to keep up with his progress and to report certain prayer points with you all. One of our pastors suggested we ask our friends to set an alarm during the day as a reminder to pray for Clayton. I'd like to ask all of you to sit down with your iphone and program in 6:16 am and pm. This is Clayton's birthday. We are believing for total healing and many more June 16ths to celebrate with him.

Here is our story. Right around Christmas, Chad and I noticed that Clayton's right ear had a little bit of an odd smell coming from it when we would kiss him goodnight. Nothing offensive or really awful, just different. Being that he had no fever, no complaints and was just fine, we ignored it assuming that he had some wax in there. Well, a few weeks past and Clayton was sitting on my lap watching Caroline do her gymnastics. I was whispering in his ear and he wasn't responding to me. He just was ignoring me. The next morning, he had a doctor's appt. I took him in, and he did in fact have a growth in his ear. We thought maybe it was a polyp. He was referred to our ENT who prescribed ear drops thinking that it would shrink the polyp. Two weeks later, on Friday the 4th, the polyp was still there, a little bigger, and surgery was scheduled for Monday, February 6th. Please let me say... I knew in my heart that it wasn't good. No one told me, I just knew.

He had the surgery where about a thimble full of mass... or tumor, was removed from his ear and sent off to Pathology. By Thursday afternoon at 2:30 I got the call no mom ever wants. "Mrs. Castle, This is Dr. Holland's office. Dr. Holland would like you and your husband to come to our office without Clayton." My heart sank. My legs sank to the floor. My children panicked, and got Mrs. Heather who peeled me off the floor and held me until Chad came to get me.

We walked into Dr. Holland's office with all of the fears you ever imagine you will have.. and I do hope you will only ever have to imagine, and we sit down to hear the news that our son, who is NOT sick.. at least to anyone watching him, has Rhabdomyosarcoma... Cancer. I remember looking straight through Dr. Holland and not hearing a word he said except, Cancer, MD Anderson and I'm sorry.

We walk out in absolute shock and horror. That's just how you feel. We have the job of telling our kids that we are embarking on the fight of our lives... and Clayton's.

Chad received a call from a friend who has a connection at Texas Children's Hospital in Houston. Turns out he is on the board of directors and is close friends with a man who, through God, will become our champion.. Dr. Murali Chintagumpala. By 9:00 PM, on the night our diagnosis was presented to us, we are on the phone with Dr. Murali in Houston who tells us to come on Friday with our Pathology samples and with Clayton.

We go to bed, don't sleep, but lay in bed until Friday morning, get up, fight the Pathology lab for our "specimen"... the awful CANCER that has invaded my darling son... and head with our little man to Texas Children's Hospital. We ride in almost total silence... still both thinking we are going to wake up from a horrible dream.. or should I say.. nightmare.
We arrive at Tx childrens where there are sick kids EVERYWHERE.. some reassuring to see, some not so much. Clayton is absolutely overwhelmed by the cool kid stuff EVERYWHERE. He still doesnt understand what the big deal is. We see Dr. Murali. He just wants to reconfirm Clayton's diagnosis by rerunning the labs and tells us we'll need to come back at the beginning of next week for complete scans of our little man to see if this awful cell has spread over his body. We drive home and just wait... just WAIT. Do you have any idea how hard that is?

When we were almost home, we received the call from Dr. Murali that said that he confirmed clayton's diagnosis of Rhabdomyosarcoma and that he would call first thing Monday for our appointments for MRI scans, bone marrow, xrays, blood work, all of that to determine what stage we're in. Where we stand, what we face, what Clayton Faces. All of that. So we WAIT for the phone call. Our bags are packed, our hearts are scared, our son is still happy.. unknowing.. carefree... beautiful... strong..and misbehaving :) He is perfect with a horrible disease growing in his EAR.

Please pray for us specifically for the tests this week to be encouraging. For healing, for grace for our other children. They are terrified too. Their hearts are heavy.

Here is my resting point... The Lord has promised GOOD to me... GOOD... He has promised GOOD.. I am looking for Good... Please feel free to share verses and encouragments with us. Please tell us when God has a word for you pertaining to us. It's amazing how the verses just come when you need them. As we were walking into Texas Children's Friday I just had verse after verse coming to mind assuring me that we are being Held.. Carried


Please hold us up.

37 comments:

  1. Praying for you. Crying with you. Setting my alarm. Believing for years and years of 6.16's and for a cancer free 6.16.12

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    1. Kesleigh, Clayton, & the whole fam -
      I don't even know you...but we share something pretty cool...holding onto the hope of just what mija posted above: believing for years & years of 6/16's to celebrate!

      My first baby (of seven total!) was born on June 16th, 1995. By the time he was 2 months old, we had been told he would likely be severely retarded & handicapped, and would have a painfully shortened, seizure-riddled life. He underwent 3 brain surgeries all before the age of 3 months. He struggled with horrific seizures. BUT. But every step of the way, he defied the medical prognosis; he WON. For so many years I worried and prayed and fretted: would we celebrate another June 16th with our Caleb?

      Our boy Caleb just turned sixteen this past summer. HE IS A MIRACLE. You would not know ANYthing was EVER wrong with him!!!! Yes, there have been challenges thru the years. But as you have done, Kesleigh, I chose to believe that by God's grace and Hand of miraculous healing, Caleb would WIN the battle.

      My heart & prayers are with you!
      "CLAYTON WINS!"
      Absolutely!!!

      You can read more of Caleb's journey here -
      http://freeagentmommy.typepad.com/blog/2011/02/the-caleb-miracle-part-one.html

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  2. Oh Kesleigh, this is so beautifully written! I will be praying continually for you and your precious boy. As I am typing, I look up to a verse that I have framed right above my computer. "For I KNOW the plans I have for YOU, declares the Lord. Plans for welfare and not for calamity to give you a FUTURE and a HOPE." Jeremiah 29:11

    I am forwarding your new website to all of the girls in my ladies Bible Study. I know they will be praying too!!!

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  3. Dear Kesleigh, you do not know me, I am in Amy Kiger's Bible study group. I will indeed pray for a healing for Clayton. I will pray also for you and your husband, that God give you the strength and courage to face each day with a renewed spirit. God loves you, and He loves Clayton. I know you are a very strong Christian, from the beautiful words that you wrote. When we go through trials, and keep our trust in Him, others see our Lord and Savior in us. I know God will bring good out of bad. Keep your eyes on Him. " What is faith? It is the confident assurance that what we hope for is going to happen. It is the evidence of things we cannot yet see." Hebrews 11:1 (New Living Translation)

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  4. Dear Kesleigh and Chad, My heart is heavy for you as I read this post. Kesleigh, you are truly blessed with a God-given talent! As I read it to Bruce, I found it hard to hold back my tears. We are praying for a full healing for Clayton and the strength he needs to fight off this beast that has become a part of his little body. I know you will stay strong for him and your family will prevail! Love, Holly Bordelon

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  5. Chad & Kesleigh: Reading this blog - you are right... there is nothing more terrifying than hearing something that is affecting your child. In reading this, my heart was encouraged that before anything - you've submitted this to the Lord and HE will hold you up through this entire process. He has PROMISED you GOOD - He has PROMISED you MORE than you could ever imagine. We not only pray for that... we CLAIM IT with full hearts BELIEVING it.

    Trey and I commit your son to our prayers, asking for absolute release from this and healing beyond all measure. I am praying for Dr. Murali as he works with you and Clayton in your journey in healing. We thank God for you and your family and allow us to be here for you in any way that we can. ~Karen & Trey Oakley

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  6. Kesleigh and Chad, We are praying for you and your sweet family. We pray that God will give you a calm and comfort and truly a peace that passes all understanding. You are all loved and are being prayed for by many! Love in Him, The Gochis Family

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  7. Kesleigh,

    My church and I had prayed for Clayton before I knew he was yours. My family and my church will remain in prayer for you and your family and your precious little boy.

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  8. I will be praying for you. Praying that you will be able to rest and rely on the knowledge and faith that God's grace will be sufficient for your family. I can't pretend to know how you feel, I can only imagine. I am so sorry that this is the path you are on right now. I pray God will send a detour. That He will heal Clayton. Whatever the path, I pray you will KNOW He is walking with you...holding you...keeping you...guiding you. Much love to you!
    Shannon Smith Aaron

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  9. Kesleigh and Chad, I am so saddened in my heart to hear this news. I have been out of town and just got the news. I promise you that I will be praying continually for Clayton. I know first hand how the power of God works in a situation that does not sound good. I know you remember when Heather was born, y'all were there: the doctor did not want to even try to save her, buy Julie & Darrell said yes, try to save her. They told us everyday for four months that she would not live. But God gave us an over abundance of His Grace. All the reports were bad: they told us she would be blind, deaf, retarded, cerebral-pulsey; underdeveloped lungs; and if she did survive she would be in & out of the hospital her entire life... etc etc etc... and that was only a handfull of the bad reports we received: but god had a different plan. It was a horribly difficult  journey; a journey of trust and Faith. Not something easy, but God gave us His Grace, and God had the final say. In Clayton's situation, God WILL have the final say. God is so gracious, when we are in overwhelming situations, god sends us a Supernatural Grace. I know that is what God is giving y'all right now. It is over & beyond the Grace He gives us daily. We love y'all, we hurt, we pray, we are here. My number us 717-2426. Anytime night or day. Anything, just know it is not too much to ask!!

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  10. Castle Family....Reasoner family is praying for you. You guys are such a strong and beautiful family. I miss you guys...God is on your side. Clayton...Coach Reasoner loves you. You are a strong little guy.

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  11. Praying, praying, praying...Be still and know the God of the Universe is in conrol. The Maker of all things...who knitted your boy in your womb...is in control. Praying, praying, praying.

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  12. Kesleigh,

    You do not know me, I am an friend of Rhonda Williams. I saw her post on FB and decided to read. This is close to my heart, I have two little boys 5 and 3. I can't imagine what you are walking through right now. But I would like to share something with you since you asked for anything encouraging. You need to be reassured, the Lord is already working on your behalf. As you asked, I went to my iPhone to "schedule" praying for your precious Clayton. I wanted to choose a ringtone song that I would KNOW was only for him. And when I opened iTunes to find one, what came up was such a GOD choice :) I had searched a few days ago for a song that my son was requesting that he had listened to in his class last week. It was Voice of Truth by Casting Crowns and it was still in my search. I KNOW that the Lord arranged this, the way He does those little things. My son's teacher sent the words to the song home last week so the parents could read them but I TRULY believe at THIS moment that they were sent home so that I could easily get my fingertips on them to put them down for you. I'm sure you're familiar with this song, but you can read the beginning and let the Lord minister to you through it. The song comes from 2 Cor 12:7-10/1 Cor 1:20-2:4. I can't imagine how hard it must be but I will be praying you will be able to "to listen and believe the Voice of Truth" above all the other voices and I will be praying and believing healing and restoration for Clayton.
    Your sister in the body of Christ,
    Holly Owens

    [Oh what i would do to have
    the kind of faith it takes to climb out of this boat I'm in
    onto the crashing waves
    to step out of my comfort zone
    into the realm of the unknown where Jesus is
    and he holding out His hand

    But the waves are calling out my name and they laugh at me
    Reminding me of all the times I've tried before and failed
    the waves they keep on telling me time and time again
    "Boy, you'll never win, you'll never win"

    But the Voice of Truth tells me a different story
    the Voice of Truth says "Do not be afraid"
    And the Voice of Truth says "this is for My glory"
    out of all the voices calling out to me
    I will choose to listen and believe the Voice of Truth]

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  13. we are praying for your family and will continue too. i am truly heartbroken. know that God is good and that He sees you, holds you and carries you. love you guys. Greg& Tracey

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  14. Kesleigh and Chad, The Lord is at the helm of the ship! Do not fear the storm and the waves, only keep your eyes on Him as He takes you all through these rough waters. Many, many are praying. The battle is the Lords! Try your best to rest in His mighty arms as He carries you through this tempest. "Now faith is the substance of things hoped for the evidence of things not seen"...praying here in NY Love you and praying! Anne Bingham

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  15. My son had Rhabdo. I have been in your show. I remover our day. The day your would changes for the better. It may not seem like it now but clinge to Jesus and know he will carry you though this. Much cancer momma love and prayers headed your way. Please feel free to email me at jenninman3@aol.com

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  16. Please know that Truell's and I are praying. He is often up in the night and will pray then. I pray early. You will I'm sure be covered all day. Don't hesitate to call if there is anything we can do.

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  17. Will definitely program 6:16 into my phone kesleigh.... beautiful blog. Praying.

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  18. Prayers from Clayton and your family from another rhabdo family. We were in your shoes almost one year ago and are still in the fight. You will get through this and your family will be stronger in the end. I couldn't ever make a caringbridge either. If you want to check out my daughter's journey, it's hanwayfamily.blogspot.com

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  19. Cancer cannot win because I have Jesus within

    Always with me wherever I go in all life’s highs and lows

    Nothing can come unto me that my Jesus cannot see

    Can do all things that my God has put into the road I trod

    Eternity is mine all of the time

    Remember you win with Jesus no matter where He leads us

    Written by J. J. Judge on 6/13/2008

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  20. Kesleigh, I'm not sure if you even remember me, but I have been keeping in touch with your mom, and sisters through Facebook. Our family has been going through a deep valley of trials also, and I thank God for all the encouraging words that have come from my friends and family. God gave me this verse for you this morning....“You keep track of all my sorrows. You have collected all my tears in your bottle. You have recorded each one in your book.” Psalm 56:8. Our God is bigger than any sickness and disease! I'm adding Clayton to my list of "God's Miracles"! Clayton, and my granddaughter Olivia Grace will be LIVING TESTIMONIES of just how great our God is! Praying for peace for you today! Love, Laurie McGraw (Shellye's mother).

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  21. I'm a friend and church member with Rachel J. in NY. It must have been hard to even write this, I was in tears just reading it.
    I want to let you know that I'm setting my alarm for 6:16 to stop and pray for God's perfect health for Clayton. For God's wisdom for the doctors entrusted to his care and for God's perfect love to surround your family to give you all strength that can only come from Him.

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  22. We are praying for your sweet family!! We serve a Mighty God who is Big Enough!! He is the Great Physician who will heal your precious boy! A few scriptures: Matthew 18 : 19, Matthew 11:28, and Jeremiah 29:11. Sending much love to you! God bless!!

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  23. Dearest Kesleigh, I have been praying for Clayton, for you and Chad and the other children since I first heard the news. Here is a scripture verse for you...
    Ps. 56:3-4

    When I am afraid, I will put my trust in You.
    In God, whose word I praise, In God I have put my trust; I shall not be afraid...

    Ps 57:2

    I will cry to God Most High, To God who accomplishes all things for me.
    He will send from heaven and save me....
    ....God will send forth His lovingkindness and His truth.

    Ps 55:22

    Cast your burden upon the Lord and He will sustain you'\
    He will never all the righteous to be shaken...

    Romans 8:26-28

    In the same way the Spirit also helps our weakness; for we do not know how to pray as we should, but the Spirit Himself intercedes for us with groanings too deep for words; and He who searches the hearts knows what the mind of the Spirit is, because He intercedes for the saints according to the will of God. And we know that God causes all things to work together for good to those who love God, to those who are called according to His purpose.

    With continued prayer for you...Barb Hardeman <><

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  24. We are friends of the Mays. Praying over your family (along with our church). We are in the Houston area. If you ever need anything at all, we would be happy to be called on.

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  25. Kesleigh,

    I just saw your blog posted on Facebook from Ilsa Weaver.
    We will be praying fervently for you all over these next few weeks and months and especially in this next week. We will pray for sweet Clayton--for healing--and your other three children-for peace and joy--as I have such sweet memories of all four swimming in our pool during lessons each summer.

    The LORD your God is with you, he is mighty to save. He will take great delight in you, he will quiet you with his love, he will rejoice over you with singing." Zeph. 3:17

    May you feel great and unexplainable peace and hope,

    Allison McDowell Nance

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  26. sweet Kesleigh, my family and I will be praying fervently for your family and precious boy. We pray that he will be completely healed! We pray that as you walk through tests with him that he will be at ease and not be afraid. We pray that God will cover you in peace and that you will feel His arms wrapped around you. I was trying to think of a song and all I can think of was us singing "you rock my soul" in chapel:) Many hugs and love, Kristy Bonaventure Otts and family

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  27. Kesleigh, We will certainly lift up your precious Clayton in our prayers. I pray for peace that only God can provide for you during this time of uncertainty. "Be still and know that I am God" Pslam 46:10

    Susan Thompson (SuSu)

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  28. Kesleigh, one of our dear friends recently broke his spine falling from a ladder. He shared this verse with us and told us how much he clings to this verse during his painful recovery. I pray it will be a comfort to you as well:

    James 1:2-4 Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything.

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  29. Our prayers in Birmingham, AL are with your family. My daughter dates Eric and Terri Poe's son, Cody. I believe they are related to you. I am marking your blog and will check back frequently.

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  30. I am standing with you in agreement for complete healing for Clayton, in Jesus' name. The verses I held on to after finding out I had melanoma 8 years ago while pregnant with our third child was Psalms 103:1-5, “ Praise the LORD, my soul; all my inmost being, praise his holy name. 2 Praise the LORD, my soul, and forget not all his benefits— 3 who forgives all your sins and heals all your diseases, 4 who redeems your life from the pit and crowns you with love and compassion, 5 who satisfies your desires with good things so that your youth is renewed like the eagle’s.” and Isaiah 53: 5, “But he was pierced for our transgressions, he was crushed for our iniquities; the punishment that brought us peace was on him, and by his wounds we are healed." Love and Blessings and big, big hugs to you and your family!

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  31. Kneeling at the throne of the Great Physician on Clayton's behalf!! I love you all so much. Jesus is walking right beside you all...He will never leave you or forsake you. Thank God ALL His promises are true!

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  32. Heard about your precious Clayton through my nephew, Patrick Baldwin. Praying for your family from Tucson, Arizona.

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  33. I went to school with Chad a gazillion years ago. I just saw this blog on his fb. I stading with you in prayer. My alarms are set, and I will share this blog. As I read this post, all I could think of was Phillipians 4:6-7... Be anxious for nothing, but in everything, by prayer and supplication with thanksgiving, make your requests known to God, and the peace which passes all understanding shall guard your hearts and minds in Christ.

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  34. I'm so glad to have this picture of Clayton to keep in mind when I pray. Know you are being brought before our Father

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  35. Kesleigh, this is your cousin christy. Katy forwarded me your blog. I am so excited to get connected with you, but not under these circumstances. I am shocked and stunned at what taking place. I have prayed for you guys continually with great intent since I read your entry several days ago. My oldest is 7. So I attempt to image how you are feeling even though I can't even come close. The thought of little Clayton going through this makes my chest tighten with anxiety. Please know that we are praying fervently for Gods great healing to take place. We love you,
    Christy, Mick, Mickey 7, Molly 5, and Ally 2

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  36. Kesleigh. My heart breaks for you and your family. Having children of my own, I can only imagine. My wife and I pray for the mercy of G-d. We pray that healing power from on high would touch Clayton's body from head to toe. We pray the shalom of G-d over him: wholeness of soul, spirit and body. In Yeshua's name we speak healing over him and take authority over every scheme of the kingdom of darkness for this boy and declare that what the devil has intended for evil, G-d will use for good. I prophesy that no weapon formed against this young man will prosper in Yeshua's name. His will be a story that will touch thousands and how you and your family carry yourselves through this in brokenness and humility will be a testimony to thousands as well. It will bring hope to many who will have sicknesses in their families that they will need courage and grace to believe for healing in. I have faith that G-d will turn it all around. Know that you have a few more people standing with you in faith, in Yeshua's name. Blessings over your family/home and especially over Clayton. May it be done!

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