Wednesday, December 12, 2012

i am broken.

i dont think i can type much. i kept running this in my head... what i wanted to write down. but i will keep it simple.

last night, reese puked. basically just once. and only bile.

but as protocol says, go to ER. i went at 4am. they did blood work, a CT scan, xrays... her vitals were fine. her sodiums were fine. it didnt look like swelling on the CT.

i get home early this afternoon and EJ gets a call. from our neurosurgeon.

she looked at the scans. the chemo is not working. the part of the tumor on the left side of her head is, again, larger. we will go in tomorrow for an MRI and we have a resection scheduled for next tuesday.

if it wasnt for the CT, it would likely have been too late by the time we had our next MRI (january). we have to resect, change chemos, and hope that it laps the growth this time.we will send scans to st. jude's asap, as well, to get a 2nd opinion.

i have cried all day. EJ has cried all day. there is nothing to say anymore. this just isnt fair.

my head is pounding from crying. every single time reese sees miller and wants to hug her and love her, i break down. reese is acting totally normal and to know that inside her head, its getting worse, is the worst pain i have ever experienced.

so please pray. please please please. there's nothing else we can do right now. please, God, save my baby.


167 comments:

  1. Praying, praying and more praying. I wish I could do something to heal your baby and take away the tumor. Praying for Reese and your whole family.

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  2. oh gosh, my stomach is in knots. I dont know what exactly this means, but I know it's not good and I'm sorry. I'm praying for your girl and all of you. Hugs. <3

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  3. you are not broken. you are frustrated, tired, sad and angry. you are plenty more things, but you are not broken. sometimes it's two steps forward and one step back. and while that step back feels like more than you can bear, and you will break....you will regroup, find strength, keep the hope, and you will keep going. we're all praying for reesey! keep smiling girl.

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  4. My mama heart is broken for you. I can't imagine. I'm so glad you took her in! Sending so much love to you and your family.

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  5. Praying, praying, praying. You're right... it isn't fair. We don't know why stuff like this happens. Poor Reese... poor family. You will get through this!!!! <3 <3 <3

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  6. Sending so many prayers and lots of love your way Amanda! Put it in His hands! God Bless!

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  7. You don't know me. I was directed to your blog by a friend, but I wanted you to know that we are praying for your sweet baby.

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  8. I am so sorry Amanda, Reese is in my prayers.

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  9. Praying. ♥
    -ginger murray

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  10. oh honey we will keep praying for your baby. xoxoxox love to you and your family, amanda.

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  11. No words can take away your pain and I can't even begin to image the pain you are feeling, but please know I am praying for you and that sweet baby girl of yours!!!!

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  12. Oh, Amanda. I just can't believe this. All my love <3

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  13. I am so very sorry, and sending all the prayers we have right now your way.

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  14. Oh amanda. Prayers, and I will even fast for your sweet girl this next Sunday.

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  15. I am heartbroken for you and cannot imagine the pain your family is going through. Praying that this is just a bump in the road of recovery and that you get encouraging test results. Sending prayers and love to sweet little Reese and her family.

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  16. praying, amanda. praying so hard for your sweet girl.

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  17. you are strong. EJ is strong. your girls are strong, loving and caring for their little sister. I am so glad she was able to be taken in for the CT. I am praying for Reese and your family every morning and night. (((hugs)))
    Stacey Pickett

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  18. It breaks my heart to read this. I think about Reese & your beautiful family all the time.
    ((hugs))

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  19. God, please save this sweet girl. Place Your healing hand on her so that she may serve as a walking talking example of a miracle to give others hope and You glory.

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  20. My God Bless you and keep you (and you family) and give you peace. Cast all of your cares upon Him for he cares for you. Y'all are in our prayers.
    God Bless!

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  21. OMG tears are running down my face. Lot's of love and prayers coming your way!!!!

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  22. So many prayers are coming your way. God is the ultimate healer. He can take this situation and turn it around just like that, and I have faith that He will do so. I will continue lifting Reese up in my prayers and also pray for strength and peace for you and EJ. I can't even begin to fathom the level of grief you two are going through right now. It's gut wrenching just to think about.

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  23. Let us carry the prayers...rest your mind dear friend...know that you are surrounded and held in angels arms.

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  24. I saw your blog because of a friend and I just wanted to say, you aren't alone. I will be telling my church to be praying and I will be praying. God heals and I know he will heal your baby girl. Good luck and I pray for a Merry Christmas.

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  25. I am so sorry. This is so tragic. I am sitting here, so far away and unable to do anything, crying and praying for her recovery. This is just so awful. I don't know why this is happening to you and your family, but please know that I am thinking about y'all and love you so much.

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  26. Heartbroken for you and little Reese. Praying for healing and understanding.

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  27. I can't imagine. Best wishes to your family & I've said a prayer for your sweet Reese.

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  28. I am so sorry, Amanda. My heart is breaking for your family. As soon I finished reading this we stopped what we were doing, prayed for Reese's healing and for your family to have your old normal back. Continued prayers, love, hugs, and more prayers.

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  29. Praying and sending love, Amanda.

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  30. Strong prayers and thoughts coming your way.

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  31. I am praying too. I will send you all my strength for this heartbreaking time.

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  32. I am so so so so sorry. I am broken for you, as a Mom. I can't imagine the pain you all must be going through. I will definitely be praying for Reese and the rest of you.

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  33. Praying so very hard for your little fighter. I wish I could give you a great big hug right now.

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  34. You are in my prayers always!!

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  35. I am praying. Just know that even our worse times, our worse days, God is in control and His love for us is unmeasurable.

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  36. Dear Heavenly Father, please be with this family. Please place guidance and wisdom in the medical professionals taking care of Reese. Please help the treatments work to save this beautiful baby. Place peace within her parent's heart that you will take care of her. In your Son's holy and precious name, Amen.

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  37. I'm so, so, so sorry. I've said a prayer for your little girl.

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  38. We have and will be praying very hard for Reesey!

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  39. i only know your sweet family through this blog but there isn't a day that goes by that i'm not thinking of and praying for you all. I pray this next chemo will work for Reese and that before you know it, this will all be way in the past.

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  40. I am so devastated and saddened by this news. I know that I cannot say anything to ease your pain, but know that I am praying, PRAYING, and PRAYING! Keep the faith, keep hoping, keep believing!!
    Jeremiah 29:11 "For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you a hope and a future."

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  41. Big huge prayers coming your way tonight.......stay strong mama, we all love you, your family and sweet reesey....

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  42. "The Will of God will never take you where the Grace of God will will not protect you." ~Pastor Zina Pierre
    I'm so sorry. Praying for an army of angels to surround you and to give you peace.

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  44. I went to hs with Ashley and stumbled on to your story through a Facebook group we are in together. I can't even imagine what you are going through, but you seem like such an incredible mother and I've been thinking of sweet Reese every day. Praying for your family.

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  45. You can do this. Reese can do this. EJ can do this. Even when you don't think you can, you will move forward. Keep fighting Reesey!

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  46. Praying for Reese and your family.

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  47. May the peace and love that surpasses all others be with your sweet, sweet family. There are no words of wisdom that can be offered for such difficult situations. I believe in the power of prayer and am praying for your baby girl often.

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  48. I tell you the truth, if you had faith even as small as the mustard seed, you could say to this mountain, “Move from here to there,” and it would move. Nothing would be impossible. Matthew 17:20

    I pray that your mountain will move!

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  49. My prayers are with you and your family and little Reese. God will bring your family through this tough time. I know you will be strong for the the rest of your family, but it is okay for you to feel what you are feeling too. Things will get better, know that you have a ton of people supporting you, even if from afar/behind the scenes.

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  50. My heart hurts for you, Amanda. You have an enormous trust in a loving and wonderous God and he will continue to hold you, Reese and the rest of your family in his hands. We will continue to pray for you guys, for strength and peace and healing.

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  51. Dear God,
    Please give this family the strength and energy necessary to fight this battle. I pray for Reese's strength, good health, and comfort.
    Lord hear our prayers.
    Amen.

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  52. We are continuing our prayers for Reesey! Put all your Faith in God's hands, he has full control over everything and will get all of you through this. He has to, he will, he must! She is so strong and having you & EJ there as her extra strength as well as God as her pillar she will be held so high that nothing can stop her.

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  53. I'm so sorry for all of your pain. I will pray for your family & Reese.

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  54. Make time to read the book, THE BOY WHO CAME BACK FROM HEAVEN...by Kevin and Alex Malarkey. Sells at Walmart. It will make you realize what God needs you to know, for Reese's sake. Meanwhile, stay positive. Doubt, is the devil at work. She WILL survive this. Praying for your precious girl...

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  55. Praying for you and your family! Lifting you up to God!

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  56. I am so sorry. So many thoughts and prayers your way.

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  57. We will be praying for your sweet baby and you as well. I don't pretend to know what you are going through but my heart is with you. My newborn was recently admitted to the NICU for neonatal seizures. We are out now and all is well but I have a new found empathy for similar situations and a deep appreciation for the power of prayer. There were innumerable prayers offered on behalf of our family and we were blessed continually with favor and endurance. I will be praying the same in abundance for you as well as outstanding miracles. Take heart, "The Lord is near to the brokenhearted and saves those who are crushed in spirit “ -Psalm 34:18. Praying for you and yours.

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  58. I am so sorry. Prayers are with you and your family... Will pray for your precious little girl to get well...

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  59. I told several people I know your story here...my whole church is praying for your baby healing and for you as well as your family... Hang in there don't lose faith believe in God all things are possible and remember that every second is precious.

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  60. You and your family are in my prayers.

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  61. I will hold beautiful Reese and your whole sweet family in my prayers. From one mommy to another, my heart is hurting so badly for you right now.

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  62. Praying for your precious little girl!

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  63. I am so sorry you are going through this. Your family and your sweet baby are in my thoughts.

    Not sure if you would be interested in the John Hopkins PMA Registry, but basically you can register Reese and they collect info of her treatments and use it to help better treatments in the future, since it is such a newly recognized tumor.

    http://www.hopkinsmedicine.org/kimmel_cancer_center/research_clinical_trials/research/brain_cancer/pilomyxoid_astrocytoma_registry.html

    My best to you, Reese, and your family.

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  64. Praying, praying, praying for your sweet girl.

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  65. I am so so sorry your family is going through this. I can't begin to imagine what you must be feeling. I will be sending positive thoughts and prayers out for sweet Reesey.

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  66. Just another stranger stopping by to tell you that you aren't alone. Praying for you, your family, and your sweet girl.

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  67. While it seems like the worst thing that could be happening, today's events are a gift from God. It's His way of letting everyone know the path she was on wasn't right. Now her caregivers have the wisdom they need to win this battle. Trust Him. And don't let defeat into your thoughts. Praying my hardest for all of you.

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  68. Sending lots of prayers your way. Stay strong Reese, you sweet girl. You will get through this.

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  69. I have been reading your blog religiously for years now - years. In fact I started reading the summer of 2009, right when you learned you were pregnant with Reese.

    I don't know what to say, or do. I read this post and burst into tears. I'm trying to type through my crying. This is not fair at all, this shit is WRONG and I am so, SO sorry. I do not believe in a God but I swear on everything I will pray more than I ever have in my life for the universe to bring healing to your precious daughter Reese.

    You and your family are not alone.

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  70. Praying for your Sweet Reesey and your family.

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  71. Praying for you harder than ever! I was so sad to see this update! There are so many people praying for your sweet girl, so many people you don't even know. All those prayers count. We'll keep them up! Stay strong.

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  72. Sending all the prayers I've got your way, and telling my friends and family to do the same. My heart is breaking for you.

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  73. I'm so sorry to hear this =*( Praying, praying, praying for little Reese and your family.

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  74. I couldn't even imagine ur pain...our prayer are with u and ur family in ur time of need! MAY GOD BLESS ALL OF YOU

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  75. Praying with everything I have. Hang in there.

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  76. My tummy is in knots just reading this. I can't imagine what you are going through. I know we serve a big God & he heard our prayers. I'm praying now & I will continue to pray for Reese & your family. Lots of love to you all

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  77. I am praying that Reese is miraculously healed and that Reese and your family do not have to go through any more pain and that your story will bring the multitudes to know the Power and Love of Jesus. - In Jesus Name AMEN

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  78. Praying his peace will guard your hearts and minds in Christ, that he will bring healing, that your hearts will know the depths of his tender mercy and you will emerge from this battle knowing anew that he has already won the war. Immanuel, God with us, walks with you - may you all feel his presence!

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  79. Praying without ceasing for your beautiful little girl. My heart is aching for you and your family. Sending love and prayers.

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  80. I am praying without ceasing and asking God, begging Stay strong and take care of each other! I am heartbroken. Amanda i send you :big hugs: and prayers, so many prayers from my mommy's heart to yours

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  81. Praying. My heart hurts for you.

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  82. Praying to St. Jude for your little girl. Hugs.

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  83. I am so sorry y'all are going through this. I'll continue to pray for your family and sweet Reese.

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  84. Praying for you and Reesey in Ohio. May God wrap you in His loving arms and give you His peace during this difficult time.

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  85. I found your blog from a mutual friend, and I have been following your story since Reesey was diagnosed. My heart hurts for your family. Stay strong in your faith and I am sending many prayers for your sweet Reese. May God give you peace and courage during this difficult time.

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  86. Amanda, I just learned of Reese's condition today. I want you to know that I am committing all of you to Jesus in prayer. I will be praying for comfort, for peace, for rest whenever you can get it, and most of all for Reese's healing.

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  87. Sweet family, my heart breaks for you. I will carry you in my prayers and in my heart. I will pray for full recovery for Reese and strength and peace for all of you. May God bless and keep you.

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  88. My heart is breaking for your family, but I am on my knees in prayer for you all. Constant prayers on behalf of you all and sweet little Reese. I'm praying for your miracle.

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  89. Keep your faith up. Reese can fight this, her doctors can fight this. She has the best care and the best parents for the job. You can do this. I'll keep praying.

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  90. Praying for Reese and your whole family!

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  91. Love you and am praying.

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  92. Praying, praying and more praying.

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  93. Oh no. I am so sorry. You are all in my thoughts.

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  94. I found your blog looking up photography. Now I'm praying for your family everyday. This is a good time of the year for miracles. Prayers to Jesus for Reesey from NJ.

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  95. I pray daily for your sweet baby girl and your family.

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  96. So much love and prayers to your family and little Reese. I am so sorry that you all are dealing with this. So, so sorry.

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  97. i lost my little girl from a brain tumor, i don't know the fight you have, i only know we lost the battle, i will be sending prayers that this fight and healing will continue for your little one. cancer is so unfair to these precious innocent little souls. ♥

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  98. I don't know you, I found you from a random fb post. Please know people all over the planet are praying for your baby girl. I cried through pages and pages of your blog and promise you I am fighting this fight with you in prayer. My heart breaks and I just cannot imagine what you feel. lifting you all to Jesus.

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  99. Let me first say,I am so sorry for what you and your family are going through I will pray to St Jude to look over the child.Maybe with all the prayers coming that way a mircle may happen GOD BLESS YOU

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  100. Praying for your baby girl. Sending much love your way.

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  101. My heart is breaking for you. I am praying.

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  102. Praying for your sweet baby all the way from over seas!

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  103. I'm am so sorry. A piece of my heart breaks after reading this. Prayers for you, your husband, and all of your babies.

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  104. I will continue to pray for little Reese & for your family. May God keep his hand upon you. May he give you strength & wisdom to know exactly what to do. I pray for total healing for your sweet baby.

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  105. I'm praying that this is the worst day of your life. Everything is uphill and better from this day on.

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  106. Father, you are the ultimate healer. You make the impossible possible. Father, we thank you for being with this family in their time of grief and sorrow and anger and all the other emotions raging through them. We know from Your Word, You NEVER will leave nor forsake us, and we ask you would cover this family with Your promises and Your love. Father, we pray for ease of suffering in mind, body, and spirit over your six precious children. We ask for Your perfect peace to blanket this family. Hold them in your tender worn hands, protect them from anything not of you. We ask Your perfect will be done with this young life. We ask You would breathe a new refreshment into the parents and give them strength. We trust in Your will and in Your promises. In Jesus name, amen.
    Thinking of your family in these trying times,
    Megan (Canada)

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  107. I'm glad you're getting a second opinion. Do you have any personal friends who are doctors? Because this would be a really good time to ask them where THEY would take THEIR child if their child had this tumor -- like, which treatment center would they want to do the surgery, to determine the best kind of chemo, etc.

    For some forms of cancer it doesn't matter because everyone does the same thing. (Hodgkin's Lymphoma, for instant: they know what to do for the best outcomes, and everyone does it.) But for some forms of cancer it matters a lot where you go. I have some friends here in Minneapolis who took their son to Boston for two months because he had a sinonasal tumor and Boston could do proton-beam radiation therapy.

    Anyway. Doctors you know personally are more likely than anyone else to be able to tell you where to go.

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    1. I agree with this. It is time for a second opinion, and maybe to look into other places to go and treatments to try. I am so sorry you are going through this. I can't imagine how painful this is for you, and my heart truly breaks to see your family going through this. I am continuing to pray for Reese and the Skelte family.

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  108. I am praying for your baby and the rest of your family and sending good thoughts for health and peace to all of you as well. I am so sorry your precious child is having to endure this, I can't imagine how tough this is for you and EJ. Much love and hugs to you all. Kim (dubby)

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  109. Praying Amanda! You will get through this...
    And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus- Phil 4:7

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  110. When they told me my babies may not make it in to the world, I found this: "Don't tell God how big your storm is - tell the storm how big your God is!" I pray that God is already working to calm your storm and bring your family peace during this unspeakably difficult time. I experienced a miracle, and I pray you will too. You will be in my prayers daily!

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  111. Praying for you and your family. May the Lord be with you as you go through this trial and may He give the doctors the knowledge to heal your darling Reese.

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  112. I am praying for Reese now. I will also pray for peace, rest, clarity in decision making and the stregnthing of relationships. We're pulling for you, sweet girl!

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  113. Praying so hard for Reese. I am so sorry, this broke my heart.

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  114. I too will be praying and posting this on my fb page for all my prayer warriors to join in.

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  115. Reading this breaks my heart. I can no imagine the pain you and your family are going through and I pray that god heals your baby and i pray the healing process quickly takes a turn for the best. My thoughts and prayers are with you.

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  116. Nothing I can say will lift your hurt. the closest I an get to understanding your hurt is to look at my own two and imagine if it was one of them. I cried reading your posts and imaging your pain as my own. Recently I've seen pictures of kids in front of Christmas trees holding signs with their name, date, and a note that they kicked cancer's butt! I have a friend whose daughter just beat a brain tumor. Someday it will be you. You will be holding the camera and Reesey will be in front of the tree and there will be a sign that she kicked cancer's butt! I'm going to sit on this blog every day until I see that picture. Hang in there. Take my strength if you need it.

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  117. I have no words. I am so, so very sorry to hear this. Your little girl is in my heart and prayers.

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  118. Praying for Reese and your whole family. This is heartbreaking.

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  119. Your prayer warriors are behind you. Where you feel broken, we will be united to try to hold you together. This step back is devastating, but you will get through this. Reese will get through this. Sending many hugs to you and your family.

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  120. I was directed to your blog from a friend of mine on facebook that asked for prayers for you and your family. I am a mother of two, and my baby boy is just 6 months younger then your Reese. I cried as I read your blog detailing her fight, and my heart hurts to imagine what that must be like. I will certainly be thinking and praying for you - no parent should ever have to go through something like this. Although I don't know you, from the amount of time you spend blogging/writing/photographing your kids, it seems like you are a wonderful and loving mother, deserving of only the best. I hope that this holiday season brings that for you and your little girl!!

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  121. I have been reading your blog for years as my three have practically the same birthdays as Sawyer, Reese and Miller. I don't know what kind of courage and strength you must have to be dealing with this. Everyday I check in and hope you have posted a miracle about your sweet girl but for now I will hold you and your family in my prayers. May Reese's surgery have the best possible outcome and you find the answers you need in a second opinion.

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  122. my daughter is only a few months younger than yours and I cannot imagine her having to go through what little Reese is.I have read your entire blog and cried the whole time....I pray for your family and your precious baby...

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  123. Amanda, you and I have never met, but that doesn't matter. I heard about Reese and your family from a family member, and I want you to know that I feel strongly that better days lie ahead for your family. Please keep the faith, try to stay strong for Reese and your other children, and cling to your husband whenever possible. You are all in my prayers.

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  124. I am new to your blog but I want you to know that I am praying for you and your sweet baby girl. You are in my thoughts and I pray that God gives you the strength you need. Much love coming your way.

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  125. Amanda, I am so sorry that you are going through this. Reese is beautiful and her ignorance to the tumor is merciful. She's a lucky girl to be so loved. Be strong! You are all in my thoughts. xxx

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  126. I have been reading your blog since I found out I was pregnant with my daughter. I was so nervous about raising just one child, so to see you raise your four daughters so gracefully was an inspiration to me. I will keep little Reese and your family in our prayers.

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  127. I found your blog through a friend of mine on FB requesting prayer for your family. I wanted to say thank you for being so open and honest about this road you guys have been taking. I pray health and healing over your beautiful little Reese. I will pray for wisdom in the doctors you are dealing with and that God's overwhelming peace that passes our understanding would envelope your family.

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  128. Amanda, I'm praying for you, EJ, and the girls. Love y'all! Brandi Davis

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  129. Praying, praying, praying.

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  130. I am also lifting your sweet child up in prayer and asking that God perform a miracle for your child and family.

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  131. Praying for your broken heart and God's grace to heal your baby girl.

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  132. Praying. wishing, hoping. Stay strong sweet Reese, you have a wonderful like ahead of you and an army of love behind you.

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  133. Praying for Reese, your family and all those that come are working to help Reese. May God give you strength and light to guide you through this fight.

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  134. Praying with a heavy heart. Poor baby, sweet baby. Thinking about you guys all the time. Terry B.

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  135. Praying for sweet Reese and your family. Thank you for sharing your family and your journey through this difficult time. Please know there are thousands of people that are thinking and praying for Reese to get though all of this!

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  136. Lifting your family up in prayer. Heavenly father please continue to give strength to Reese and her family. Guide them through this time. Heal Reese.

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  137. Praying for your sweet Reese! I've been following your story as it's posted by a photographer here in IN that I follow. Praying God gives Reese, you and your husband strength and peace. Keep believing in Him, he loves us so much and even when it's hard to understand and makes absolutely no sense to us, he still has a grand plan in mind for all of us. Praying for the doctors and nurses, that God will show them exactly what Reese needs!
    "For I know the plans I have for you, says the Lord, thoughts of peace and not of evil, to give you a future and a hope. Then you will call upon Me and go and pray to Me, and I will listen to you." Jeremiah 29:11-12

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  138. We are praying, and I hope it's okay that I shared your blog on my Facebook wall to gather more prayers for Reese. I am Evan W's mom (in S's preschool class). Praying!!

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  139. Praying harder then I've ever prayed for someone I've never met before....stay strong Reece! So many hugs to you too, mama.

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  140. wow. i am so sorry to read this. i will be thinking of reese, please keep us updated. i have been there, i have been afraid for my child's life, and it's nothing anyone on this earth should have to go through. prayers for reese and for the rest of you too as you go through this.

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  141. Praying, praying praying. I am so sorry. You are so right, none of this is fair. I wish there were words... Just sending lots of love from Houston, tx.

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  142. many prayers to you and your baby.

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  143. My Family will continue to pray for Reese and your entire Family. Stay strong and continue to fight. My two kids 2 and 4 ask how Reese is doing everyday and pray for her each day.

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  144. We are praying for your family...praying for complete healing.
    Thankful to serve a God who is big enough to heal your sweet baby.

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  145. Praying for you guys. Joanne

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  146. Amanda I am praying for you and your family. Praying that god will heal sweet baby Reese

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  147. Praying for you and your baby girl.

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  148. Praying for you all as well as doctors treating Reese.

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  149. prayers, prayers and prayers headed up for you guys.

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  150. I'm so sorry, I hope they can get a new treatment asap and things will be better,prayers from Iowa to all of you.Keep strong and hold on to hope.

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  151. In the name of Jesús I declare her free from suffering Amen

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  152. Praying for you and your entire family.

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  153. So sorry to read this. How is she doing now?

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  154. You don't know me but I read about your little girl on Casey Leigh's blog. We are a family of 4 in Maryland and will be praying for your sweet girl Reesey and your family. All of the aspects of this trial over which you have no control, place them in His hands. God does hear and answer our prayers. Our baby girl was born at 26 weeks 6 days gestation earlier this year due to PPROM. She weighed only 2 pounds, 6 ounces. After spending 87 days in the NICU, being weaned from a ventilator to SiPAP to CPAP to a nasal canula and finally to room air, a scare that she was developing necrotizing entercolitis (which turned out to be a milk protein allergy to the human milk fortifier they were giving her), she is doing fantastic now at 10 months, 7 months corrected age. {hugs}

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  155. Prayers, major prayers for your sweet baby Reese. I admire your strength, even though you feel as though you have none, I think you're amazing. Stay strong for her, she needs you and you will all, together, overcome this.

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