in General

hanging in there

Ezra is more stable now than he was earlier in the week, but we’re still not sure what that really means. His oxygen has remained at the same level for a few days now, and earlier in the week it was having to be upped daily, so that’s good. The doctors say there is now more fluid in each lung as well as in the abdominal cavity. The chemo is definitely working, but the problem remains – how much? The neuroblastoma is all over – one of the most aggressive the drs have seen. There is a lot of uric acid in his urine, which shows the tumors are being broken down, but there’s no way to tell how much or where.

He is still not talking or opening his eyes, but his heart rate is lower and oxygen is good. There is a lot of swelling from fluid retention. The eye where the tumor is next to is having a pretty rough time – he pretty much can’t open it at all, and when he does you can see it is not doing very well. It sucks to see it, I’ll tell you that.

Neuroblastoma is a beast, and it’s frustrating as hell. We will definitely be dedicating time and money into doing all we can to ensure other families don’t have to continue going through this as time goes on.

Re: Nifurtimox, I believe we should have some by Monday if not today. It’s been crazy to see everyone mobilizing to get this stuff to us, and I think we’re close now. I don’t know how much it will be able to do. We are still praying for a miracle.

Tonight will be the last day of chemo. Basically, the plan after this is to wait and see if the cancer was killed enough to allow his body to recover. We are nervous, since the last round of chemo worked pretty well – but within 2 weeks the cancer had returned. At this point his cancer is much heavier than it was before, so we need a miracle. Thank you again to the thousands and thousands of people who have been praying, sharing our site, and sending in thoughts, donations, etc… so much!

I hate to have folks seeing him sick like this – he’s such a happy kid with an incredible personality. Here’s a picture from less than 2 weeks ago of him playing with Robyn… I miss his smile. The kid is hilarious. I added a few videos of him as well (look to the right on this page, there’s a video gallery link) so you can see his personality.

Hey – Charley is doing great! He’s at home in Tampa, and we’ve had around the clock nursing combined with a parade of our friends standing in to make sure he’s being well taken care of. We’re truly blessed with the family we’ve come to know here.

Please keep praying.

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  1. So glad to see you’re holding on, Ezra!! We’re covering you with prayer and petition and asking for tons of strength for your very strong parents. I hope you are home and looking at your little brother Charley very, very soon!!!

  2. Bless little Ezra! We are praying so hard. I watched some of your you tube videos of Ezra. He has such a sweet laugh and personality. I love the “Say Ipad” video. It had me laughing out loud. So precious.

  3. Thank you for the update! l loved the videos! Little man likes Jethro Tull. I want to give him a hug so bad.

    Praying like crazy!

  4. Ezra is absolutely precious!! God blessed you with an adorable little boy! We will continue to pray around the clock. Praise God always. . . even in the storms. He will NEVER leave you!

  5. What an amazing little guy you have! Your story caught my attention on facebook. I have been helping a friend who’s baby has a brain tumor so I see alot of children’s stories on there, and I have to be honest, I don’t normally read them because it hurts my soul to do so. Your little Ezra really caught my attention though, and your family’s story. Thank you so much for letting us share with you a very personal struggle. I know your family will be okay no matter what God decides. I have enough medical knowledge to know that Ezra probably shouldn’t have survived the week. All the prayers must be doing something! I would really like to help your family financially, is there a paypal account or somewhere I can make a donation? Again, thank you for sharing your story so honestly and openly. I will be praying for your miracle and for peace for your family after such a turbulent year.

  6. Love the pictures, Love the video’s, Love the updates and Love you guys too!!

    Glad to see things are stable! Hoping and praying for more positive progress through the weekend!! I’ll be praying too, that Ezra be home in time for Halloween!

    Always in my thoughts, heart and prayers!


  7. Your family is so precious to us. We share a church, faith, an awesome Healer & a family that extends to eternity. Praying without ceasing!

  8. Tomorrow is my 40th birthday and all I want is for this family to have more time with this precious little boy! I’m praying with all of my might that Ezra receives the miracle that he so needs! God Bless you all!

  9. Hang in there sweet precious boy! You have captured my heart and all I can do is pray for miracles. Mom and dad you are brave, strong, faithful people and you are an inspiration to us all. So happy to hear that Charlie is doing well.

  10. Look at that fighter!! Such strength in that little man! Such strength in y’all too! We continue to pray for Ezra!!

  11. We are, Kyle. Even with his eyes closed and not able to talk, he is fighting with all he has, and we are praying with all that we are. Please keep fighting. It will never be for nothing.

  12. This story has touched my heart. I am standing with you believing for a miracle. You do not know me. I just came upon your story through a friend via Facebook. Normally I do not get involved but with Ezra, I was drawn into it. God is a good God we know this and He keeps us strong. I pray that you, parents may find peace in the midst of the chaos and diagnoses this may produce. I can see and read that your love for Ezra has no limitations. I will continue to pray and pray some more because there is nothing else I can do. Keep strong and believe that God will show you the way!

  13. I first heard of your family from our daughter and son-in-law, Jenni and Kevin. I have been following your battle with this monstrous disease and praying for your sweet precious Ezra all week. Your strength and courage are amazing and an inspiration to all. I will continue to pray for that miracle.

  14. I really feel for your family especially Ezra. I had a friend who passed away due to bone cancer yet til her last moment she believed that God can heal. Ezra’s video was shared to me by a friend and I know that it is God’s will that led me to see his video, as of right now I am in my fasting and prayer day, i will definitely intercede in behalf of Ezra. Truly God’s miracle is all that we’re waiting on.. always remember our God never slumbers nor sleep, He knows our needs and He will not give us anything that we cannot bear, at the time we can’t God is there to sustain us and rescue us. I believe God will continue to sustain Ezra and you can count on our church that we will pray for him every morning at 5am in our daily devotion as well as in our personal prayers. May God continue to strengthen your family and restore Ezra’s body as if nothing had happened to him. God bless you

  15. Well, as we all know, God is in the miracle department and if there’s one out there just waiting…I pray it goes to your sweet little angel, Ezra. I continue to pray for your whole family.

  16. I sent text’s to everyone i know,all over this country and they will pass it along,I asked that everyone keep your family and Ezra in there prayers!! We will keep it going,God is listening! I am in awe of your strength, My son went through a time of illness also and i was mad at God, but i have learned not to be, that HE gave me this gift and HE will take care of his children!!

    Love and Prayers, The Paradis Family

  17. I read the comment the other day with the song lyrics from Mark Schultz. I could just picture you two praying over Ezra to that degree and it made me think. How much more did God not want to let His only begotten Son die. Yet He willing gave Him up to pay the due price for our sin. And in all the emotions I have encountered praying for a sweet little boy and family I have never met, especially with having two little boys of my own, I had a whole new picture of the agony of the Father while His Son was on the cross. Knowing how deeply I want to see Ezra receive a miracle and how my heart breaks for you all, I cannot fathom “how deep the Father’s love for me, how vast beyond all measure, that He would GIVE His only Son to make a wretch His treasure”! Thank You, Lord!

    Praying the Nifurtimox will be here sooner than expected! Ezra, you are a brave and sweet boy! Kyle and Robyn, hold on to our God and to each other! Todd (From Selah) and Angie Smith were on today’s broadcast of Focus on the Family, you may be encouraged by their words.

    Praying and begging God for a miracle for Ezra! Knowing prayer is the vessel God uses to align our will with His, not the other way around!

  18. My family and friends have been made aware of your family’s need for prayer. They have all committed to saying prayers and keeping your family in the forefront of their thoughts. May the Lord bless you all and heal and protect Ezra. I firmly believe that miracles happen and I pray now that your family will be blessed with one in this time of greatest need.

  19. Praise God for such a precious little boy. I know what God did for our 4 yr. old granddaughter who is now a beautiful healthy little girl. HE loves that little boy of yours even more than you do. We will continue to pray for his healing and strength for you and your family. In Jesus Name!

  20. praying praying praying, your strength and faith are an amazing thing to behold. God bless you all. sending much love,
    Weber family

  21. Ezra is definitely a strong n brave lil boy! I hope and pray that the Nifurtimox comes sooner than expected and that he responds quickly…keep fighting Ezra and we’ll keep praying!!

  22. What a precious child Ezra is. Every word of this blog reveals the depth of your love for him and the intensity with which you are fighting for your son. He is so blessed to have you as his parents. Keep fighting, Matthews family — I believe in miracles.

  23. Ezra, I don’t know you in person, but you are in my heart. I cannot do anything without praying for you and your family. My husband and my son are also praying for all of you. Hang in there little angel, you have amazing people around you, and I know that God is right next to you, cleaning your body through the medication you are getting. You and your family are in my thoughts and prayers. God bless all of you…. And I hope I can see a video of you having fun with your beautiful little brother very soon…

  24. Hi….I just was introduced to your family by an old friend who is praying for you…I have joined him and want you to know. I live outside of Atlanta and will be asking that the Holy Spirit comforts all of you in a mighty way.

  25. We are sending many prayer requests out in behalf of baby Ezra and both of you. We pray for God’s healing power upon your sweet little son.