This morning Ezra’s chance of surviving was none. Now, that has changed to slim. We’ll take that.
The major reason they weren’t able to schedule the chemo and continue any sort of treatment this morning is because Ezra hadn’t peed in over 12 hours – this is the method the body uses to get rid of chemo once it moves through the body, so without being able to have normal wet diapers, the chemo would have been quickly poisoning him, faster than the cancer itself was doing it’s job. In the early afternoon today, Ezra suddenly had two full wet diapers within an hour. Keep praying, people! They just started his second night of chemo right now, so we are holding to a sliver of hope. He is still not holding platelets at all, so his breathing has to continue on his own – intubating him (that tube in his throat to breathe for him) brings an incredibly high risk of bleeding internally. In other words, this is a very risky situation which is holding on by prayer and a thread.
His heart rate is lower (good), and his breathing has also calmed down. His stomach is still very distended and his liver inflamed, so we’re not sure how this will play out. We are praying.
In true Ezra Matthews Crew fashion, we have taken over the family waiting room with family. There’s 20 or so people here, crammed into our room and the waiting room down the hall. We’ve set up camp at the local Ronald McDonald house and a few hotels. They’re laughing with us, crying with us, and just being here. It matters. Some have flown in from as far as California or Seattle to be here, and the mood is hesitantly hopeful. We’re all praying, and we’re all enjoying being with each other, even in a moment like this. I can’t understand how people would be able to do this alone.
I’ve been in contact with Dr Sholler, who is the dr in charge of the Nifurtimox trial out of the University of Vermont. She chatted with me for half an hour tonight personally about Ezra and his health and the trial. She has sent me contact information for Bayer, who markets Nifurtimox, and has said they have been known (rarely, it seems) to give out the drug on a case by case basis when speaking directly to the patient or family. I’ll email them right after I press send on this update, and if I hear a negative answer – I’ll have all of you mobilize again to make something happen there. Dr Sholler said she’d received tons of email and phone calls today regarding Ezra. We CAN make things happen in that regard – together we know a lot of people.
As always, I’ll keep everyone informed. We throw all our hope and prayer into whatever basket we are able to get, and this one wasn’t even a possibility this morning – keep praying.
Hand on, Ez. Hang on, boy.
That’s so awesome! You have so many people backing you up! Let us kno who we need to call/ email/ harass to get little man what he needs 😀
Keep fighting baby!!! We are here for whatever we can do! I will call, I will
e-mail, I will pray!!!!!
How awesome is our God!!
May God strengthen and heal your tired, little body Ezra. I’m praying for a miracle for you.
Praying for healing and a miracle. God Bless baby Ezra. May he be in comfort and continue to make progress. Hopeful he will win this fight (:
With God ALL things are possible. Prayers going up continuously for Ezra and all who love him.
I’m reading saying “hmmm!” over and over and with my mouth in a more “upwards” turn as this truly is better news! even the 2 wet diapers and how timely they came in. I have been soul-searching all day and trying to wrestle with God over your boy’s healing and your whole family’s past year…..I keep having different thoughts that come aloud to me that make me say “yes, Jesus” and “thank you for this and that reminder”. Praise God that we have a LIVING God who hears all of us now as we cry out in unity with your family, Kyle!!!
That’s such good news! I’ve been holding my breath for you guys and crying all day. You don’t know me but I went to MPHS also (class of 98) have been keeping up on your story …thank you for updating tonight…I had a preemie at 36weeks…I feel the one thing that helped get him out of the NICU so fast was kangaroo care…skin to skin contact. Its worth a try..I have 2 kids under 2 years old. I will hug them a little longer tonight..and we will pray for you and your family.
Ezra has constantly been in my prayers and on my mind. Thank you for the update.
Please God, give us a miracle!
Thinking of you often and sending lots of love your way.
Show off a little God, we’re believing for a miracle! Just keep plugging away Ezra <3
God is amazing, and everything he does I am thankful for. I am thankful to God that he has given you just a little more time with Ezra, and I am praying that little more time turns into a lot more time! God is a mighty God and he can do anything! Let this all be for his Glory!
I am praying for you & your family. So sorry for what you are going through. I currently have a son in the NICU as he was born at 27 weeks. Also staying in The Ronald McDonald House too. I will hold my son a little tighter & will continue to keep you in my thoughts. I am so sorry for your loss.
Hang in there tough guy. We are praying for you!!
I have been praying for precious Ezra and trusting, pleading to God for a super natural miracle! I am overjoyed at this update!! Thank you for updating! We are continuing to intercede on Ezra’s behalf!
In Joshua 10:12 it says ” 12Then Joshua spoke to the Lord on the day when the Lord gave the Amorites over to the Israelites, and he said in the sight of Israel, Sun, be silent and stand still at Gibeon, and you, moon, in the Valley of Ajalon!
13And the sun stood still, and the moon stayed, until the nation took vengeance upon their enemies. Is not this written in the Book of Jasher? So the sun stood still in the midst of the heavens and did not hasten to go down for about a whole day.
14There was no day like it before or since, when the Lord heeded the voice of a man. For the Lord fought for Israel.”
As Pastor Steven Furtick has encouraged it’s time to continue praying “Sun Stand Still” prayers.The Lord heeded the voice of man for Joshua and His people of Israel and we are praying he heeds our voice as well and heals and comforts Ezra. Thank you Jesus for being a God of Suddenly, immediately and at once. We pray you suddenly and immediately and at once heal Ezra. In Jesus mighty name.Amen
I don’t know how I got your blog. I prayed for Ezra and the rest of his precious family. And I praised God that he picked your family to care for Ezra. I believe that it is your family that can glorify God best during these critical times. It’s so hard and it’s easy for the rest of us to say but it’s forever about glorifying God and you all are perfect for the job! You are showing the world a very magnified picture of Jesus Christ. I pray that it be God’s will to do a miracle for all of us watching this baby. I pray that he will heal Ezra.Lean not just on God but lean into Him. Rest in Him. Let Him hold you. We all are holding a very bright spiritual candle for you. Tender mercies and blessings, dear brother.
Kyle, I am sure you don’t remember me, but I used to be your Aunt…I was married to Cliff and am the mother of Aubrey and Zachary. I am so very touched and sorry for you and your family’s pain. God is a very wonderful, powerful, and ruthless person. I pray that you and Robin have fulfilled His needs. My heart is with Ezra, you, your wife and Charlie.
Ezra and your family are in my prayers tonight until forever.
psalms 120:1
God bless your family.
My prayers are with your whole family as you go through this tough time with Ezra. Your family has been through so much. May this bring you more time with your son. Peace.
Hi, you don’t know me, my name is Becky. One of my Facebook friends had posted the link to your blog earlier today and I just happen to read it. I have been in tears off and on all day from heartbreak for you, your family, and Ezra.
My 4 year old son and I prayed earlier today for Ezra. When we said “Amen,” my son said “His mommmy and daddy don’t have to be sad anymore, Jesus will heal him now.” There is nothing like the faith of a child!
I know that God can heal Ezra, and I am asking everyone I know to pray for that healing.
Such WONDERFUL news that he had the wet diapers.
My prayers, thoughts, and love go out to you and you precious family…
Praying without ceasing and my email and phone is ready to go…I would be more than happy to give Bayer a call and or several emails!!! Whatever we can do..if it was my baby that is what I would want..it is your baby and that is what you will get!!! GOD is on this!!! Thank you Father for healing this beautiful baby and for showing us miracles!!!
Praying for Ezra, and for you and Robyn this morning.
Last night before heading out to my oldest bowling league I had the boys sit down and hold hands with me and pray. We praised God for the change in Ezra and for continued change. We will be getting together again this morning the same way to pray. As we come together in prayer across the nation for Ezra all of us holding on to each others spiritual hands lifting up Ezra, no matter what the doctors will continue to be stupped by massive improvement. If asked be sure to tell them that though they are great at what they do and what they do is much needed, GOD is the ultimate healer! God is the true doctor here. We are praying that God continues to heal, the he removes the fluid build up, and surgicaly removes all the cancer from Ezra. I know he can do it because he removed my aunts cancer before she went for surgery to remove it. Stumping the doctors by leaving nothing but scar tissue. She had never had surgery before. Our God can do the most AMAZING things no doubt! As I lift my hands to the Lord in prayer I lift up Ezra and pray the same thing….Lord heal this little boy and restore him to as new as the day he was born. Remove all cancer Lord leaving the doctors stupped and amazed at what has happened. Make doctors who don’t believe begin to believe and make believers continue on to tell others about this amazing child they were blessed to have treated and seen first hand God work amazing miracles. Continuing on making believers of non believers. Praise God for what he has done so far and is continuing to do! PRAISE GOD!!!
Keep it up Ezra! You are a very strong little boy! Praying for you all!!!!!
Thank you, Jesus!!! I know that I know that I know that He is good!! Still praying…
I am thrilled to here this progress! I am also so, so, so happy to know that you and Robyn and Ezra are surrounded by family and friends! I will be waiting on the edge of my chair for the next update and holding onto the HOPE that this chemo starts working and starts working fast!! I am so proud of you for not backing down! Too often these doctors are so quick to dismiss the glimers of hope, the chances at life that they are not easily talked into continuing treatment but stand your ground, you know Ezra better than they know your charts and he will tell you when he’s done!
I will be praying and sending my love to you every second of the day!
With love and lots of HOPE!
Heather
PRAISE GOD!!!!! We WILL keep praying and we WILL send another email if you need us to. Our God CAN do anything!!!Thank you God! We are together in this and continue with locked arms.
Yes, there is hope with faith! I have been praying so much for your little warrior and will continue to pray for him.
Thank you Lord for encouraging our hearts and giving us more faith and hope to keep praying and believing…
I believe in prayer, because I know My God is an awesome God who can work miracles with “only a thread” … know that we are praying …
The Beck Family
Many prayers for your sweet boy! I hope God has nothing but good for you.
I don’t know you Ezra but… I love you buddy! Gathered the warriors I know to fight for you in prayer.
http://www.youtube.com/watch?v=GaB53_AS7Ug
We’re praying for your entire family.
-The Beatty Family
Praising God for the change in Ezra’s status!!!! My family and I will continue to pray without ceasing!
The Curtiss Family
Hallelujah!! PRAISE the Lord For the improvements in Ezra, there timing. A thread of Hope is all one needs to keep fighting! I am so hopeful that He continues to change Ezra’s condition, to improve it, to HEAL Ezra. Slowly, perfectly. I KNOW with all that I am that GOD is ALMIGHTY! He is a Healer and I am grateful that He has improved Ezra and improved HOPE. I am forever awed My God’s Grace, His Power, His Love, His Mercy. I am awed by the changes in everyone else as a result of your family’s journey. I have shared your battle with every person I know and 100’s more I don’t. I have been begging anyone who will listen to pray for your son, who is also a son of God. And I am awed at how many are CRYING OUT for your son’s Healing! I will, my family and friends will continue to Praise and Glorify His Name. Ezra, I believe are going to WIN the battle, continue to rest in the Lord, He will hold you up and fight beside you. I hope that you have a very big basket to throw your hope and prayer into because there is A LOT of HOPE left and millions of Prayers coming your way to fill that basket! Prayers through Believers like everyone praying for Ezra are still raining down and will not stop! For when Believers pray Miracles Happen!! Kyle, Robyn Tell us what you need us to do. Email, phone calls. It will be done! Yesterday I sent emails to the drug trial and will again if needed! I also called both Arnold Palmer and the Trial Hospital in Vermont. Where I spoke w/ a very nice nurse who left what I hope was a very powerful messages for Dr. Scholler. So you are right “We CAN make things happen in that regard”. You are not alone in this fight! We love you guys and will be here for you! STILL PRAYING!
Another candle burning and heart crying out in prayer for Ezra. I only just ‘met’ your family through this blog, and he has touched my soul. Your precious boy is loved all across this nation and we hold him up for God’s healing. Love to you all.
I agree with everyone else. You tell me when, and I’ll call, e-mail, or do whatever I can to get Ezra what he needs.
Keep on giving us those wet diapers Ez! With God, all things are possible! We were told that my baby brother wouldn’t live to see his 4th birthday if he didn’t have a liver transplant before he was 3. Well, he had his transplant when he was 8, and is now 23! I know it was God who kept him going when even the doctors doubted! Keep the faith!
Praying for you and your family! Thank you for taking the time to keep all of us posted!
Our family is praying for you all night and day. Prayers of peace, comfort and healing. Your story is so inspiring and Ezra is a lucky fella to have a family like yours. It’s so wonderful to read that you all are surrounded by a huge Ezra fan club! 😉
Huge Harris hugs and prayers to you from GA!
Praying for Ezra and for your entire family!
Here are Corporate Contacts for Bayer. I have sent an email to each of these.
willy.scherf@bayer.com; claudio.abreu@bayer.com
markus.pickel@bayer.com; hartmut.alsfasser@bayer.com; gisela.lenz@bayer.com;
greg.babe@bayer.com
I started reading your story yesterday, and it absolutely broke my heart. In this past year we found out that my husband has Crohn’s disease, and he almost died from malnutrition. Only a miracle from God allowed him to live. It was terrifying to see him in the hospital on the feeding tubes; so I don’t even want to imagine how I would have felt if it was one of my kids. I feel that it is very important for me to stand with you in prayer for your family, and God challenged me to spend today in prayer and fasting. You are standing up against huge trials, and I want to remind you that you are not alone. As big as our pain gets, as big as our fear, our God is so much bigger than all of it! Allow Him to be your comfort and strength. Lean on Him, He will never let you down.
Praise the Lord for wet diappers!!!
I just heard of your little man yesterday and have been praying for him, for a miracle, for the Lord to leave people in awe of his power, love and mercy. Thank u for taking the time to post updates.
In my heart and prayers.
Please give your strong little man a big hug from me please.
Kyle you have done an awesome and exceptional job writing and keeping us informed!! My thoughts and prayer are with you, Robyn and other family members. If there’s anything we can do when for you please let us know. Kristen can contact me. My heart goes out to Ezra being so strong. I agree it’s not fair to Ezra…what strength he shows us all. God Bless you Ezra and The Mathew Family. Glad I got to meet through Grace. Love to you all.