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slippery slope

This has been an extremely hard week for Ezra. He started the week tired but smiling and talkative. As the days have passed, he’s been increasingly more tired, and the last 3 days he’s pretty much slept all day, with brief moments of being awake and talkative. We were slated to start chemo and the Nifurtimox trial today, and still are – but we wound up leaving early yesterday and asking to be admitted through the ER last night at Arnold Palmer, since he seemed extremely fatigued and uncomfortable. This is very unlike him – even during the treatments he’s had this year. During stem cell he was this out of it, but that was chemo induced.

On Tuesday Ezra’s platelets were 10 (10k that is – a normal range is between 150k-400k, for him 50k-100k is normal), which is low but he’s had that before. He normally gets platelets then, and they’ll jump up and stay that way a few weeks. By Thursday they checked him again and his platelets were 9. He got platelets again on Thursday, and last night they were 5. His hemoglobin count last night was 9 (normal range is 9-12 for him), and by this morning it was 6. This means his blood counts are dropping extremely fast, and the dr has scheduled an ultrasound of the stomach to see if perhaps he has internal bleeding. The dr doesn’t think that’s the case, but we are checking. If it’s not internal bleeding, it’s just the cancer taking things in way too fast. His heart rate is high and his oxygen levels are very low – he’s on a nasal cannula which is giving him oxygen.

The doctor says these are all signs of Ezra’s body shutting down.

This is /not/ an end-all, there have been cases in exactly Ezra’s situation where this chemo and trial drug quickly reacted and the patient got 6 more months of active, quality life before relapsing and passing. We are still 100% planning on starting the chemo (as long as the ultrasound doesn’t show bleeding in his abdomen – there would be no treatment available if that is the case), but Dr Levy has been clear that the chemo itself can push him over the edge of life since Ezra is very fragile right now. Not treating, however – without a miracle – would most likely only give Ezra days from the way he is looking now. He is in and out of waking and sleeping, and we are laying on the bed with him.

Please, pray – we aren’t ready for this.

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138 Comments

  1. Then a miracle it will be. Do You heard that, Lord?? We need you. We need you now! We are standing, firmly, in agreement with you right this very moment. The gates of heaven are being beaten on, fiercely. We will not back down, we will not relent. Please don’t let your arms go down, we are here holding them up for you. Blessed be the Name.

    • I pray for you and your family. I feel your pain and hope that God will touch you with his gentle hand, give you endless peace and overwhelming love. Your brother in faith, Bruno.

  2. I’ve been praying for you guys. I know how much cancer sucks! I’ve lost a very close and special person to me and I know it’s hard. My question was and probably always will be, “Why God?”
    Know that God is holding you no matter what his plan is! He is your strength and your all. He is all we have left when we are at the lowest points in our lives.
    I remember and always will remember those who supported me thru my friend’s illness and those who helped me to grieve. You guys are loved and prayed for!
    No matter what happens, and no matter how hard it is, God is the master and his plans we may not know but they are for a reason, this isn’t for nothing, and he can do the miraculous!

  3. You all have been and will continue to be in our prayers. You are NOT alone. God is holding you ALL in His loving arms and has promised to NEVER leave you.

  4. my God I pray you come down and walk this earth, in the form of a dr or a parent a vistor anyone and you use them father, with your healing powers to lay hands on this baby and make all of the sickness and pain be gone, speaking in tongues, fasting in suplication using the holy spirit to guide this family and prepare them with the armor needed for battle !! This baby will receive healing in Jesus mighty name

  5. He is a shelter in the midst of this storm. How great is His faithfulness. May His wings cover you all and all the family. He is never failing and is not forgetful of you. His love is everlasting. His promises are true. He know how to heal a hurting and broken heart. He is the great Physician. We are praying for you and the great hope of God’s faithfulness.

  6. Our whole household and all our brothers and sisters we can cry out to are praying for your all fervently – for healing and for hope.

  7. I know you/of you through Lindsay Tracy and have been receiving updates through her for the past year(s). I am praying for your family and Ezra, as is my family in North Carolina. Peace to you on this day.

  8. Our prayer team in Cincinnati, OH received a prayer request for Ezra. Please know that you all are in our thoughts and prayers here also. I lost my only child in 2007. My heart breaks because you have already lost one child. What I do know is that we serve a great and mighty God, and He will keep you close to His heart!

  9. Heavenly Father, we pray that you touch Ezra with your awe-inspiring, healing power. Breathe the breath of life through his bones, sweet Holy Spirit. Give Robyn and Kyle strength beyond measure. We are asking for a miracle, dear Jesus, and we will continue to praise you in the midst of the darkness, for in you we put our trust and hope.

  10. Ezra, we love you & your amazing, strong parents. We’re praying so hard for you because you & your family deserve a miracle! God is with you always just as you are always in our hearts & prayers. Love you.

  11. Please know our family is praying for your family!!
    Psalm 34:4
    I sought the LORD, and he heard me, and delivered me from all my fears

  12. Im so sorry to hear about all this, I had no idea anything was going on, I’ll definitely be praying hard for all of you!

  13. Words can not even begin to express how your story has touched my life. Your faith amazes me and I am literaly in my closet on my knees pleading with God for a miracle. I truly believe God is creating an atmosphere for a mighty healing that would bring Him all the glory!!! Love you guys!

  14. I don’t know what to say. I don’t know your family but have friends that do. I just wanted you to know that I am praying, praying, praying for your family!

  15. My heart goes out to your family! My wife and I have and will continue to keep you guys in our prayers. Keep the faith!

  16. Kyle, My name is Josh Hunter. A friend of yours sent me your blog info. We just walked through Gliobastoma Multiforme with our 5 year old daughter, Ava who went to be with Jesus in early September. My wife Lisa and I are praying for you and for miraculous healing for Ezra. If you ever need to talk with a family who is living it…feel free to email me and I can give you my number. Lisa and I are happy to chat. We truly know the pain you are walking through. I know you know it…but God is good…all the time. No need to do anything with this, just know we are praying.

  17. Our hearts break, our tears flow, our prayers continue for Ezra to be healed, and for peace and comfort for you all. May you feel God’s presence, for He is there.

  18. Your family makes my faith in God stronger. Please stay strong. For Ezra, for each other, and for Charlie.

  19. I will not even pretend to understand all that you are going through. I only wish there were words to say, something I could do that would offer some kind of comfort for your family. Instead I will call upon the name of the Lord, plea for His grace and mercy to do for you, in you and through you what only God can do. I stand in agreement with my brothers and sisters as we offer in the flesh all we can in spite of its limitations and I offer in the spirit all that we can as we lean not on our own understanding.

    A friend in Christ,
    Gary Barker

    Habakkuk 3:17-19

  20. Just joined on in prayer for your family! I am just now finding out about your urgent needs and I am in, on my knees before the Lord who is ABLE! May God give you Great Strength right now in his name and be there for Ezra! We are here for you in any way we can be let us know your needs! May God be so close and real to you right now as you need him! God is good all the time for sure we stand in the gap with you because of HIM!

  21. I just wrote but not sure it posted just wanted you to know we are now with you as family just hearing of your story and on our knees before the Lord for Ezra and for your strength and Gods mercy to be ever real to you right now in Jesus name! If there is anything we can do please let us know just have peace knowing we as many care for you and your urgent needs! Lord be Lord for this family now in their extreme time of need!

  22. Dear Sweet Ezra and Family. I believe in a Lord of impossibilities, in the Prince of Peace, in the Great Comforter. I am keeping you close in prayer, asking our Savior for great comfort, for a miracle, for peace for you Ezra. I hold you up to Jesus’ arms and ask that His angels surround you. May you know His perfect plan for your life.

  23. Kyle- I heard your story through the Hunter blog. I will be praying for your family-for strength, hope, courage, and healing. God is already using your testimony for amazing things! Love in Christ, Kristyn

  24. praying – and praying – and not knowing what to say – to you or God – we love you and hope for a miracle. treasure the moments – every moment.

  25. I read Josh’s blog tonight. Now yours. Tears. Prayers. God be glorified in this. As the Giver of life, I pray for Ezra’s.

  26. Father God, reach down wrap this family in your arms. You are an awesome God. Please give this family a miracle,one only you can. Cover this family with the blood of Jesus. Thank you Lord.

  27. I read your story through my brother Josh’s blog. My heart aches for you. I am praying for you and for Ezra. Praying for a miracle.

  28. I followed a link from Josh Hunter’s blog to this about Ezra’s journey…
    I am praying for your son and family now. My heart breaks for you.
    ~Kelli King Bock~

  29. Kyle and family, I am praying for Ezra also. Josh Hunter is a friend who asked us to pray for Ezra, but just today, so many others who keep his family in prayer sent along your prayer request for your son. I pray for healing this side of heaven for your sweet child and peaceful sleep of your family tonight!

  30. There are things that happen to us and we know not why… But I tell you the truth… Either way God WILL answer your/our prayers. It is our wish and prayer to God for the Great Physician Jesus to heal Ezra. I have personally lost family and friends to this dreaded cancer. If God heals him for life here on earth, then may God be glorified in it all. If God wants to have Ezra in his presence now, Then praise God as he will be rescued from the evil we fight daily in this world. Dear God, please forgive us as we are all sinners. We/I are not worthy of you, or of your forgiveness and blessings. I pray that it will be and is your will to fully heal Ezra for life here on earth. I pray that all this will be done to glorify your name and to be a witness to this world that you ARE, and that you are ALIVE and that you are in CONTROL. Please God the Father, God the Son, and the Holy Spirit… I pray that you heal Ezra. I personally am unworthy of even asking of such a favor. But I know that if I were in Ezra’s parents shoes, I fear that I would lack the ability and strength to be able to begin to handle this. I ask all of this in Jesus precious name… Amen.

  31. I do not know you directly but have been following your family’s incredibly tough journey through a friend. Please know prayers are being said daily for healing for Ezra, and for strength for both of you. While we do not always understand God’s hand, let us never doubt His heart. When He took a friend of mine way too soon, the priest said she was so blessed to have been called to suffer in order to share in the resurrection of Christ. You, too, are being called. I wish you comfort, and am praying like crazy for a miracle for your little boy.

  32. Kyle & Robyn – You are such awesome parents and so faithful. I am so proud to know you. I want you to know that Ezra is so precious to us all and I do believe with all of my heart that God is going to put the right people in Ezra’s life to help him. Ezra is such a strong boy who has such a loving heart. He will have such a testimony when he gets through this. There is a wonderful prayerful atmosphere tonight for Ezra, so Robyn and you need to snuggle in God’s presence knowing that He has not forgotten you. He Loves you and wants the desires of your heart. Praise His holy name, our loving and merciful Father.

    You have ALL of my prayers and Love,
    Lorri Lilly

  33. I heard of your story thru Lizzy Hunter. She asked for prayers for your son. Your family is in my prayers. May God Bless and comfort you.

  34. I learned about Ezra through Josh Hunter’s blog. I am praying for a miracle for your family, and believing that God will work unbelievable good for you through this, even though the road is so, so hard.

  35. Praying for you and searching still for the medicine with so many others. Father God, In the Name of Jesus, Holy spirit be my words, hear our cries for you are our Deliverer, Our Only Hope, Our Comfort,Everlasting Father, wrap your loving arms around this family, keep them under your wings for I know you do Lord and bring that healing to them Lord, In your precious name, Amen.

  36. Wow, I wish I had a way to stop the ordeal Ezra is going thru, but I’m just a guy. Whatever the plan God has for him. Please know it’s so HUGE, we have no way to understand, comprehend or like it.
    Please know when you feel you don’t have the strength to keep going, God has sent his Son to walk for you. To lift you up and carry you thru this.
    I pray that somehow a miracle does happen and God bestows his grace on Ezra in this world.
    @Kyle – as a Dad I can’t imagine what you are going thru, I can only offer the same I offered Josh, if you need an arm to hit a gut to punch, an ear to yell at. Feel free to let me know. I have no idea if I would need it, but I’m a bit rough around the edges and sometimes a good yell just does me good. Either way my heart goes out to you and your wife. Stay strong and be the rock that God has chosen for her.
    A brother in Christ
    Jim Capobianco

  37. I just want to let you and your family know that I’m praying for you and for your little one. My heart goes out to you and I pray that the Lord will fill your hearts with His love and His comfort.
    Bless you,
    Jessica

  38. Father, please hold this family in your arms. Please grant them comfort and peace in the moments and days ahead. No matter how excruciating the pain they feel, I pray that they would feel Your love stronger still. I pray that they would take refuge in you and be surrounded by love…surrounded by people who walk with them and point them to You.

    Thank You for loving us in all that we go through. Thank You for your grace, goodness, and mercy. May your name be praised.

  39. Prayers for you and your beautiful family! Prayers for healing for Ezra, support, guidance, and peace for your entire family and direction and knowledge for all of the doctors, nurses and staff taking care of Ezra and your family. Ofcourse also many prayers for your other beautiful baby boy as well!

  40. Father God, Hear my prayer, Oh Lord. Hear my prayer. Many people are praying this evening for baby Ezra and His beautiful family. We ask you for the complete healing of Ezra and provide comfort and strength during this difficult time for the Matthews family.

    Heavenly Father, Ezra needs a miracle. Heal his little body and strengthen him for better and stronger days so he might to your will. Lord, keep his family in the comfort of Your hands. This we ask in Jesus name, Amen.

  41. Kyle,I read your story after hearing of you and your family through Josh and Lisa Hunter and have been praying for you. My heart aches for all you are going through. I trust that the Lord is with you in it all, may you know His comfort and His peace. He alone knows and understands your every need.

  42. I do not know you, but have heard about your blog from a friend. I am so moved by your story and wanted to lift up some prayers for you and Ezra and your family. We have a BIG God who is loving, faithful, and powerful. I will be praying for Ezra and the family tonight that God would hear your prayers and bless you with the peace and comfort.

  43. Joining in with the choir of voices praying for all of you. Father God, you know the pain, trials and anguish of this family. Please help them, heal their son, give them strength when there is none to be found. Give them peace, joy and hope. Amen.

  44. As a bereaved dad who lost his son to cancer (leukemia) 10 years ago, my heart goes out to you and am lifting all of you (esp. Ezra) in prayer. I learned of you via Josh Hunter. The website is where my son’s story is told.

    Having been down a similar road, I understand much of what you are going through and wish I could wrap you all up in a big bear hug. May God give you the strength and comfort that you need in these days.

  45. Praying you will sense God’s peace and blessed assurance as you walk this awful road. Praying for sweet Ezra’s healing this side of heaven. ..praying for you.

  46. I learned about your precious family from Josh Hunter’s Blog. My heart and prayers go out to you oh so much. I will constantly pray for Ezra, for you, & for your family. Jesus loves you immeasurably. I pray you feel His presence and care,deeply,in the midst of all that you are going through.

  47. What a sweet picture of your famiily. As soon as I finish typing this, I’ll be on my knees in prayer for Ezra, and for you and your wife. You’re a great dad – that’s evident to a total stranger. God bless your family.

  48. I consider it an honor to stand beside you and pray for Ezra. He will be healed – perfectly and completely. Our God knows the perfect timing. May God give you peace and comfort and strength in these days.

  49. I’m praying that you and your family and especially Ezra feel the Lord’s immediate presence and constant love during this difficult time.

  50. Kyle, I read your story through Josh Hunter’s blog. I am praying this morning for you, your wife, and Ezra– and will keep on praying.

  51. Came to your story from Josh’s blog…prayed last night and will continue to pray for Ezra and your family. Praying for peace and comfort for all of you.

  52. Take it or leave it, but I’ve heard a number of times that Frankinsense Oil from Young Living Oils kills cancer cells. Dilute with olive oil and rub all over his body especially the pulse points and the bottoms of the feet, and where the cancer is. Massage his feet and his hands often with oil. We’ll lift you up in prayer- that’s a given. God Bless your family and may the Lord give you strength. -Amen.

  53. Kyle, I have followed your story via Josh Hunter. You, your wife and Ezra have my prayers. Cancer is just a horror I cannot imagine. My heart breaks that your precious baby is struggling with that fight. May God bless you and keep you. May He make His face shine upon you. Please know that all of you are precious in God’s sight. He loves you and so do all of us! God bless always!!

  54. May God’s love, peace and healing comfort you and your precious little Ezra. I am praying for God to heal him and for you to feel his peace. God bless you all. I will continue to lift you up to our Lord in heaven.

  55. I learned of your story from Josh Hunter. We walked with Josh and his family through their entire ordeal with AVA. I promise you none of us will ever be the same. AVA’s story changed us…for the better. Your sweet baby and your family are committed to my prayers!!!!

  56. I read of your blog through Josh Hunter’s blog (whom I also have never met). If you get the chance, please stop by and read his blog. Good stuff going on over there. I am praying for your family. Can not even imagine what you all are going through.

  57. I too am a follower of Josh Hunter’s blog, who directed us to your blog, so that we may pray with all of our hearts and souls for baby Ezra. Please know we are on our knees praying for your sweet little warrior! May you all continue to find the faith and strength during this battle. Praying, praying, praying!!

  58. I do not know you, but heard of your family and your blog and wanted to let you know that I am praying for your son Ezra and your entire family. My best to your beautiful family.

  59. Please know that our prayers are with your family. We have prayer chains extending to Connecticut for little Ezra. God Bless you all. Keep PRAYING.

  60. My heart and prayers are with you and your family!!!! I pray for strenghth and courage as you go through this journey! I will continue to pray for your family.

  61. I am praying for you whole family and I know that God is watching over you all. I cannot imagine going through all of this with my kids or grandkids but I would stand by my love of God knowing that He is in control. Hugs and blessings to your family. Tanya

  62. We heard of your story through our friends, Josh and Lisa Hunter. We will be praying for your family, and sweet Ezra. Lord Jesus, we ask that your peace which surpasses ALL understanding cover this family today. We ask for your miraculous healing power. And we pray for strength, as they wait upon you. Your word says, that those who wait upon you will soar on wings like Eagles, they will run and not be weary, they will walk and not be faint. WE pray this in the name that is above ALL names, Jesus’- Amen.

  63. Our prayers and thoughts are with you during this difficult time. May God be with you and your Ezra and bring you all peace and strength and a cure for Ezra.

  64. My prayers are with you and little Ezar. So hard to understand, and I wonder if we are to understand! May God be with all your family and the wings of Angels hold you close. Gay and Lawrence

  65. Oh Mary, you simply said to your Son, Jesus, “They have no wine”. Jesus listened and honored you and your concern for the bride and groom. Mary, I beg you to go to your Son, once again, and say “Ezra is very sick”. Jesus could not possibly ignore you, Mary. Thanks.

  66. Please know that I am praying for Ezra and the whole family. May God wrap His loving arms around all of you and give you courage and peace and total healing of little Ezra.

  67. I was directed to your site from another person whom I do not know but I follow his blog. I started following his blog when his daughter, Ava, was going through cancer. I prayed for them (and continue to do so) and I will pray for you. I do not know you, but I have a heart for you. I know God is in control and I pray for you and your family to have the peaace and comfort from knowing this.

  68. Connected to you from Josh’s link. We pray for an awesome miracle for Ezra and peace & strength for you & your family. Our home group meets tonight and I’m sure everyone will join in prayer!

  69. Please place your healing hand on this child and restore him to health. Be meriful to his parents and give them peace.

  70. Heard of your situation through Josh Hunter’s blog. I am praying for healing for your precious Ezra and for strength, wisdom and comfort for you and your family. God Bless you all.

  71. We have been following the Hunter blog and just read about you and your precious Ezra. Please know that you are all in our prayers and we will pray day and night for you. Much love and prayers.
    The Case Family

    P.S. God Loves you all!

  72. Got this link from Josh Hunter’s blog which I have been following for some time and praying for that family. Now I am also praying for you and little Ezra, that God’s love through all of this will give you the strength for each day’s needs. As a grandmother of two precious little ones I can only imagine the emotional roller coaster you are on.
    Christian love and prayers.

  73. Josh wasn’t wrong when he said many would reply just checking back in to see where we are at now with Ezra and your family needs. We are here for you praying and believing God for answers in your battle and strength in this journey! God be with you! Let us know any changes so we can stand, kneel and be with you accordingly! Blessings my friend!The Lord brought my brother through brain surgery today and I thank him!

  74. Praying for your sweet Ezra and for God to breathe LIFE and HEALING into him. Praying for comfort for your entire family as well.

  75. The Hunter’s told us about your family and I just want to tell you that we will be praying for your sweet little boy and all of you! Praying hard!

  76. praying for you all that Ezra will have the miracle he needs to be healed….we serve an awesome God who is able to do exceedingly, abundantly above anything we can ask or think…….keep trusting our Lord!

  77. I am holding your precious boy up to our God and asking him to perform a miracle and to heal him. This I ask in Jesus precious name. Amen.Peace to you

  78. Please know that you are in my prayers for your sweet angel, Ezra. I cannot imagine what you are experiencing and I also pray that God gives both of you the strength you need to get through each day.

  79. I linked over from Josh Hunter’s site. I am praying that God holds your whole family in his arms. Love and prayers for you and your precious boy!!

  80. We are definitely praying for Ezra and your family. May God’s presence be felt and may He wrap his arms around your family!

  81. I will be praying with all my heart to the Lord. You should look into ambertose, it is helping me with a brain tumor. The number is 972-660-3219 and speak to Helen. Please say the healing versus from jody olsteen. They are bible versus that cured her from terminal liver cancer.Keep praying and trust in the Lord, miracles happen everyday, I am one of them. God Bless You

  82. Creator I humbly come in prayer, I lift my arms, I cry aloud, I breath a breath into Esra’s flesh, spirit and soul. I cry out to you lord for your divine healing, Wholeness and Newness in every area of Esra’s life. Lord Jesus, We ask you according to John 14:13-14 to cover Esra with your anointing, your glory and your presence, We pray him Healed! In Jesus name. Amen
    Let us all join as ONE in our faith our trust, our healing, our love for Ezra!!

  83. I’m praying for your healing, sweet and precious boy! Jesus, please heal him through the hands of your mother, Mary! May Ezra’s family be lifted up to the Lord and comforted in all His ways.

  84. I stand in agreement with these prayers, and the many others that I’m sure are being prayed for you and your family. May the God of Hope fill you with all joy & peace in believing, that you might abound in hope, through the Holy Spirit. (Romans 15:13)

  85. Praying for your entire family and precious Ezra. I have been reminded of him every day since first reading this blog. I call out for a miracle for this adorable little guy with thousands of others before God’s throne. I am also praying for God’s peace for both you and Robyn.

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