in General

too fast

So I’ve had quite a few of you emailing, Facebooking, texting, appearing, calling, IM’ing, Skyping, commenting… reaching out to us today. A lot has happened and a lot hasn’t happened, and another update is due to share with everyone where we’re at so far.

Ezra was pulled off the Nifurtimox trial this afternoon before even getting to start it. The trial is being conducted by a hospital in Virginia (the University of Vermont’s Vermont Cancer Center –, and after they heard about the past few days’ events, they are no longer qualifying him for the trial. They feel he’s “deteriorating too fast” and can’t justify treatment or something. Contact them here if you have a beef. 😉 I was able to ge in touch with Dr Sholler over there and she has been very helpful in working with me to try and get this drug through the company who makes it. We’re trying.

This morning Ezra was extremely tired but still would open his eyes and look at you whenever you spoke his name or made a loud noise. By afternoon, he was no longer responding to those things. He still will open his eyes briefly and talk for a few words every once in a while, but he is mostly out of it. He was making whimpering/grunting noises toward the afternoon today, and his oxygen is still low – so they did a chest xray and ultrasound. They were worried he was bleeding into his abdomen, which he doesn’t seem to be. They did see, however, a lot of fluid buildup in his abdomen, and fluid is now in his right lung as well. This is most likely from tumors blocking the body’s normal fluid escape areas. We are watching this closely. His breathing is also much more rapid because of the fluid buildup. He can’t really have this drained or operated on, because his platelets aren’t holding at all – meaning there is a very extreme risk of bleeding out if he got a surgical procedure.

I feel like this is happening way too fast.

The drs are still fairly sure this is Ezra’s body shutting down. We have started the chemo already either way, and are still planning on treating as scheduled, minus the trial drug (which I hear may be available over the counter in Germany, Argentina, and possibly Mexico… which is a crazy thought for his 30 days of 3x daily 100mg tablets he’d be getting on this trial). They’ve even gone so far as to bring up Do Not Resuscitate orders. At the moment, we have not signed these, as I feel his condition is still much in the vein of having a solid fight in him. I’m not interested in your opinion on DNR papers, so please don’t offer them. 😉 Given Ezra’s current condition, we are doing everything possible to try and beat this cancer still – or at least give him a few more good months. If God is calling him home… well that sucks and we’ll address that when we feel it needs to be addressed. That time is not now.

The room is dark right now, it’s 11:30 pm and my eyes are so dry they’re hard to keep open. All the lights are off but the room stays well lit from monitors. The silence is loud from the filtered air, pumps, and equipment. Ezra is making little noises while he rests. I do not feel strong. I am replaying in my head dozens of moments he and Robyn and I have shared laughing and playing. I fight with my hope, my doubt, my faith, and my sense of a cosmic unfairness in this. One minute the knowledge if Ezra passes he will do so directly into God’s loving arms brings great hope to me; the next minute it seems trite rhetoric. I keep thinking I just need more time with him.

I am praying. I am praying with everything I have. If desire and Godly petition alone can change the outcome of a person’s life, Ezra will no doubt be healed. There are literally thousands and thousands of people praying for him, joining us in crying out for Ezra’s healing, and believing on God for a miracle.

At the end of the day… this just sucks.

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  1. Kyle, you are so right… This is simply said… way too fast… There are more than two or more prayerfully requesting… Dear God..please intercede…

  2. Kyle, Robyn, Ezra and Charley…my family and I want you to know and hear once again that you are loved, thought about constantly, and prayed for non-stop! 🙂

  3. Though I do not know you personally I know about your story through Tammy. It is heartbreaking to here all that your family is going through now and has been through. There is absolutely no way to I can ever know exactly what you are feeling but I do agree it “SUCKS”. Ezra seems like an amazing child. I have a close friend that had 2 children prematurely. One is on earth with us and still fighting his daily challenges and the other was born and with us for a hour and 18 minutes and is now in the arms of God. I know that the path that is chosen for Ezra will be the one that is best for him. I am praying for him to win the fight against this awful disease. I pray that your family receives comfort, peace and love know he is a fighter and that God is doing everything he can and that he is loved by so many. Thank you for sharing your story of your hero.

  4. This does suck. I find myself praying every moment and reading this blog over and over from start to finish throughout the days. I remember seeing Ezra when he was first admitted into St. Joseph’s Hospital over a year ago and it broke my heart that somebody so young and small could suffer such a tragic disease. My heart breaks still for you, Robyn, Charley and Ezra and I know that you know that we are all praying. Your words are inspiring though. Though pain that lives in my life at the moment is nothing similar to ya’lls, I find your faith and words touching and lean on them. I pray for you two everyday and so are all my family. I have tears in my eyes at the moment thinking of you guys and Ezra. I pray for a miracle. I pray for your pain. I pray for Ezra to be comfortable. You know where to reach me if you need anything. Love you all.

  5. We will not cease praying. When you don’t have the energy to do so, we will pick up that slack & continue interceding for little Ezra. May God grant you all sweet rest tonight. God, please hear our cries for help. By Your stripes, we are healed!

  6. My cousin has a friend in Germany. I have already spoken to her and she is going to contact him. WhenI heard and told her it was 3 am over there, Please let me know if there is anything we can do to help! We are praying!

  7. FIGHT! FIGHT! FIGHT! EZRA!!! WE’RE PRAYING!!!! WE’RE CLAIMING HEALING! WE’RE CLAMING STRENGTH! WE’RE CLAIMING GOOD HEALTH, CANCER FREE FOREVER! OUR God IS and AWESOME GOD! A POWERFUL GOD! A MERCIFUL GOD! A GOD OF MIRACLES! A GOD OF WONDER! We’re CLAMING Ezra gets to see ALL the wonders God has made for us here. We’re CLAMING Ezra as Charley’s guide through childhood as the greatest big borther a little brother could ask for! WE’RE CLAIMING IT! WE’RE CLAMING IT IN THE LORD’S NAME!!! LORD LET HIM BE HEALED!!!!! Surround the Matthews family with your loving arms and heal this this guy. Leave the doctors wondering…how could it be?….how could this happen? YOUR LIGHT WILL SHINE BRIGHT as they are told, it happened because God is an almighty and powerful healer! Lord remove this cancer from him, drain the fluid away, and leave nothing, NOTHING in this childs body! RESTORE HIM LORD!!! HEAR OUR CRIES LORD AS WE CRY OUT AND PRAY WITH EVERYTHING WE HAVE! Your will Lord is YOUR will and we accept that and are claiming a healed child. Thank you Lord! Bless everybody in the whole wide world God and Jesus AMEN!

    My heart pours out to you guys. Though you may not know me personally Kim Wiezycki could tell you where my heart on this. I continue my prayers and hope that as you read this you know I am praying with you. You and your family have touched my life and helped me to slow down and not worry about the little things with my boys (13y/o and 19 months). Keep fighting with Ezra as we fight for himfrom here in North Georgia! WE CLAIM HEALING!

  8. After hearing about your journey and everything that you have been through our hearts have just become overwhelmed. We are overwhelmed by your strength and also your sufferings. We too struggle to understand how one family can suffer so much. We pray and pray and pray and will NOT STOP PRAYING. We ask everyone that we know to pray with us. For united we hope that these prayers will ring through Heaven and proclaim a victory in your son’s name! With ALL of our hearts we Pray the disease is removed from Ezra’s precious body and HEALED. We beg God to hear our prayers, our pleas, and for He to take hold of your son and carry him when he is too weak. We pray for God to hold your son up and Fight for with him to walk beside Ezra in this Battle and to help him win! I am a mother, We have known the loss of a child. Our story is not the same but still my heart CRIES OUT for you and Robyn. For everything you all have been through. Even with our journey in our hearts, our family can not even begin to understand what you all have been really through or what may still lie ahead. We hope what is ahead of you is happiness, that it is seeing your dreams become reality and that you will be able to do all the “normal” things that families do. We have been touched by your journey and will continue to pray for a Miracle! Grace has been our home for over 5 years. I am in our Sunday Choir and just recently joined Mops and briefly met Robyn. You both are amazing and your will make it through this battle. We will take our “beef” up with those in charge of the trial as well. Ezra needs this drug!! PLEASE know that our family is here for you in ANY way. Big or small, we will help if we can. And remember through it all you are still truly Blessed. We hope you all can find a little peace and comfort tonight, prayers and hugs.

  9. I sent my beef this morning @ 5:45am. Don’t know that it will help at all but, I sent it! I continue to pray as this is heavy on my heart an mind at all times right now. I can’t even sleep much myself. I find myself just praying and praying and the time just goes by. I pray he awakes in the morning like new, healed by the hands of Dr. God!
    Be blessed in all you and Robyn do, the people you talk to, and the lives you touch everyday. There is a purpose for everything. We don’t always know what it is but tere is.
    If I could lay hands on him and pray right now I would. God bless.

  10. You don’t know me…I just breezed through the quick story and a couple of your blog posts…All I have to say is-You Are Amazing!! Simply Amazing!! I cannot imagine all that you have gone through in a year..and have held onto Jesus through it all. I know that when we go through this stuff we don’t have anyone else to hold on to. I don’t understand why we have to go through anything and why God doesn’t just heal…with our first whimpering prayer. During a horrible trial in my own life someone asked me how I felt towards God…My conclusion was that I would never be able to find fault with Him and His plans. That when my life was over and I got to see my life from His perspective..beginning to end…I was going to see Love, Wisdom and absolute Kindness and goodness towards me concerning it all. That it was going to make me bow down and worship Him and so I “tried” to take that perspective in agreement with my future self and tried to worship him through it. I must say I failed miserably more than 50% of the mad..yelled at Him..reminded Him of what He wrote in His word and that nobody forced Him to write those promises so “just Do IT!” Ordering Him around like He was my servant instead of the other way around. So Glad for His Mercy and Unfailing Love that in spite of my reaction..loves me still. I am praying for the promise to be manifest in your son’s body…That the living word would come and rest in Ezra. We are standing with you and your family

  11. I can’t stop crying. I feel like such a crap mother after reading all that you’re going through as a family. All of my stresses and frustration are so small compared to what you are going through. May I please have Ezra’s full Hebrew name? I’d like to have others pray for him here in Jerusalem.

  12. I’m praying as though Ezra were my son or grandson. The verse I’m praying over him is Psalm 41:3 – “The Lord will sustain him (Ezra) on his sickbed and restore him (Ezra)from his bed of illness.”
    Abundant love from the Harp Family

  13. Please know your little boy and each of you are being showered with prayers and petitions to our Almighty, All-Powerful Father. I wish I could take the pain away from you all and can’t imagine going through it myself. I will not stop praying and trusting that God will heal little Ezra, and this miracle will bring glory to His name.

  14. To the entire Matthew’s family…I just wanted to let you know that we are following your story and praying for you all at St. Joe’s. Praying that Ezra can gain his strength and give you all that beautiful smile of his.

  15. My thoughts, prayers and love are with your family, Ezra, the team of doctors and for everyone involved in your journey. What a warrior you have on your hands! I pray that God gives Ezra strength…and your family strength.

  16. My family is praying for you. Waking in the middle of the night with Ezra on our hearts and minds. We pray for you and your wife as well. We are praying for a complete miraculous recovery!

  17. Kyle and Robyn; We are praying for you all. For physicians’ wisdom, most of all for God’s hand to bring about precious healing. We prayed for Ezra when he first came into the world and the ups and downs that followed. We will continue now. Our hearts are with you. May you hold tightly to the hand that brought the gift of sweet Ezra

  18. Know that someone else is praying for you and your family. As a parent, my heart breaks just looking at this picture. Asking God for a miracle for Ezra.

  19. You don’t know me but I heard about your story and I have been praying for you all night. God, please heal Ezra. I cannot stop thinking about you all and your angels.

  20. Blast our finite minds that cannot grasp the infinite. How can we comprehend a God who allows our suffering yet grieves it intensely. How can we understand His massive love for our children that makes ours look like a drop in the bucket, yet does not rescue them, in the time and way we would. God has entrusted you and Robyn with this terrible weight. HE WILL NOT FORSAKE THE RIGHTEOUS! HANG ON!
    Love, prayers, and tears,
    Debi White
    Sister in Christ from First Baptist Lutz

  21. Stay strong knowing the Lord is in this walk beside you. He will fill your doubt with assurance of his plan and his will. You are beautiful parents, God put Ezra in your loving hands…what a glorious gift.

  22. My wife and I were living at Arnold Palmer a year and a half ago when my son was born with “Digeorge Syndrome”. He had to have all types of surgeries and what not. I’m not going to waste your time with the details as I know you’ve got more than enough of your own with your little ones. I just wanted to say that I know what your going through. My wife and I clung to Romans 8:28. That helped us to set our hope on that which cannot be shaken regardless of the outcome. There is a lot that we don’t know, we do best when we cling to what we do know. That is what I took away from it all. I’m going to elave you with the word the Holy Spirit gave me the first few minutes of our sons hospitalization. “Your not alone. I know what it’s like to watch your own son suffer.” Through the trial I understood what Paul meant by “The fellowship of His suffering”. Mark my words, He will make the valley of weeping into a spring that will bring healing and life to many. For right now, your in the valley. Though it’s dark, He is with you. You are not alone. God is with you and I am praying for you.

    Never give up hope.
    Matt Bond