We had a fairly uneventful Halloween here. Well, Robyn and Ezra did I should say. Like a chump husband, I had to be in Denver on business so I was gone all day Saturday and Sunday. And thanks for asking, yes it went well. 😀 My folks stopped by the hospital to keep her company, as did her mom.
Things are pretty much in a holding pattern at the moment. He still hasn’t spoken or eaten. He still hasn’t really been “alert” – although he has definitely been awake and watching some cartoons. So maybe you could call it “alert,” just not interactive. Today marks two weeks past the day the drs had thought he most likely wouldn’t make it through the night.
Ezra got an infection over the weekend, spiked a tiny fever (100.5), and they gave him antibiotics to help push it back down. His heart rate had been up to 200 while he fought that, and now seems to be much better back around 130s. Still high for him, but low for this stay. His liver is also inflamed, and we do not know why yet.
The nurses thought it would be a good idea to try and clean out Ezra’s mouth with a bristled tooth brush, which apparently it wasn’t. His platelets were already really low. Something either nicked him in his mouth with the bristles or dislodged a scab or something from a mouth sore, and he wound up bleeding for almost 3 hours while they loaded him up with two bags of platelets. Ok, so maybe the weekend sounds like it was eventful, but really – by now us weathered hospital folk term this a boring weekend.
So let’s review. What’s the plan? We’re waiting on his counts to come up, and as soon as they do we are going to repeat the chemo. We’re still looking at Monday for that – but really it comes down to if his body will be ready or not. His white blood cells are coming back already, although tiny amounts. Monday is a very real possibility for starting another round. Assuming that goes well, we’d need to wait for his counts to recover AGAIN, then do some minor surgery to get rid of the fluid in his lungs. The fluid in his abdomen should drain itself by then, but the lung most likely won’t. Then there’s a day or two recovery from the surgery… we may well be here another month at least. If we get to there though we’ll hopefully have a once-again healthy Ezra and Charley all in the same place. Pray!
Robyn is a ferocious lioness who speaks out treatment plans and tells the drs what to do, ha. There’s literally been 3-4 times she had to tell them what something probably was, had them test/do it, and she was right. When they weren’t sure what to do at all. They’re smart folks – she just knows her son well.
I miss Charley. I miss home. I miss a bed which doesn’t wake me up literally every other hour with messed up shoulder pain. I’m tired. We’re both tired. We’ve been exhausted for a year. We’re doing everything we need to be doing, I know that. I know all the comforting words and viewpoints, I know this too shall pass, and I know we’re where we need to be right now. It just sucks, the whole thing of it. Days kind of just pass, you never know which day of the week it is or what hour. I’m hungry… what meal should I be eating right now? That sort of thing. You know when you’re really tired and you get that ache behind your eyes feeling? I feel that more often than I don’t.
Anyway… enough of that. I think I’ll go grab a Dasani from the Family Resource Room and some ice and a cup from the Family Nutrition Room and hit the sack. Thanks for hanging out, you guys are all great.
Definitely sounds eventful though I’m sure by this point you guys are used to it. We’re here if you need anything and keeping everyone in our thoughts. Love you guys.
Truly it doth suck! Thank you for sharing your guts, your perspective and keeping us posted on Ezra. Daily and often we pray- you give us the specifics to cast before our Father.
God bless you we know that you have heard all the words of encouragement you can probably handle sometimes just realize too that its ok to be discouraged to be tired to long for the normalacy that most parents get to feel. Feel whatever it is you need to feel at anytime feelings are never wrong they are feelings just know that even when you feel discouraged tired or plain overwhelmed that people see still there praying for you and that when you feel too weak to walk you WILL Be carried. God bless you as you continue on in your valiant fight for your precious boy and know that you do not fight alone.
Continuing to pray for Ezra, Charlie and the family. We love you all.
The Wagners
Birmingham, Alabama
Just finished Lioness Arising Wake up and change your world by Lisa Bevere. Every time I pass by the book I hear your words calling Robyn a Lioness. She truly is because a lioness is a stunning representation of strength that is Robyn, a lioness fiercely protects her young – Robyn, and a lioness raises a collective roar with other lioness that changes everything – that’s you Robyn. Robyn Your lion is not only represented in Kyle but the Lion of Judah Jesus is a lion fighting for your family as well. I am praying continually for Him to speak to you both, give you comfort,strength and rest as you fight this battle and change the world your living in. Love you all and continuously praying for your family.
Sincerely,
Paige
You guys are so strong. I think you and Robyn are amazing people! I’ve been praying for Ezra since I heard your story and I will continue to pray. Sending lots of love and prayers your way! I wish I could do more. Please let us know if we can do anything to help. Thank you for the updates!
I’m praying for you all along with so many. I long for a sense of normalcy (without hospitals) for your family, for Ezra. I can’t understand what you all are going through & have been through, but I can pray for God understands your exact needs. Please, email me if you all ever need anything in the Orlando area…I’m a stranger in life but a sister in Christ who lives around the corner from the hospital…
I’m praying for complete restoration of your whole family!!!
God knew the Mother and Father Ezra would need to fight for him. I love how you call your wife a lioness, she is Ezra’s voice. I am saying an extra prayer for her. I look for updates everyday and as someone previously said thank you for giving us specifics to pray for Ezra. I am waiting for the day to see his precious eyes opened, him eating and talking. I know it will come!
I can completely relate to some of what you wrote here, although your hospital stay is much longer than we’ve dealt with.
Know that your family is in my thoughts daily and I am sending up all of the healing thoughts that I can for you and Ezra.
Feel free to e-mail me if you need to vent. Us NB families need to stick together.
***hugs***
No “this too shall pass” about it… this just plain sucks hardcore. I hate that Ezra is experiencing this, that you are, that Robyn is, Charlie, any number of family and friends that surround you. It’s not okay, and it sucks.
Thank you for sharing your story with all of us random internet folk and giving us the opportunity to pray for Ezra. Many more prayers coming your way from WA.
Lindsay
1 Thessalonians 5:17-18 (17) pray continually, (18) give thanks in all circumstances; for this is God’s will for you in Christ Jesus.
A friend of mine posted vs 18 to her FB page yesterday and I liked it so I looked it up to read more and loved even more what I read in vs 17. Simply “Pray continually”. I think there are millions following vs 17 for your family alone! GOD IS GOOD! With every day passing, GOD IS GOOD! With every breath taken, GOD IS GOOD! With every moment Ezra opens his eyes to watch cartoons, GOD IS GOOD! I know how draining cancer can be on a family from watching families come through Moffitt. I worked out pt and then moved over to in pt before moving away from Tampa. Your family though is powered by God right now, He is your energizer bunny. So, though you are physically tired, sore and hungry, God will give you the strength you need when you need it, will take away the pain when asked to, and will not let you go hungry. We are all praying for total healing and I believe there is a miracle in the making. One thing we know for sure is that God doesn’t make mistakes. Ezra is a fighter to no end FOR SURE! If I am ever in battle I would want him to fight with me. We’re in the Lord’s Army and we are all fighting together, praying together, and reading together. Together we will fight! We lift up your family in prayer “continually” and will do so untill God’s miracle is complete and then we will pray continually for a cure to end childhood cancer. You can call upon your spiritual army for anything and we will help in any way we can. If you need us to fast, we will fast together, if you need urgent prayer, together we will stop what we are doing and pray for specifics. Lift you worries to the Lord and ask Him to take them from you and you will not have the extra weight on your shoulders and back. GOD IS GOOD! We continue to pray and will God bless you and your family and heal Ezra completely!
Jesus, please heal Ezra’s cancer.
Praying for good counts tomorrow and a successful round of chemo and a responsive and much better feeling Ezra. Praying for your family to be home and whole again.
You are completely right…it sucks!! Praying daily that we get an out of this world update announcing Ezra’s complete healing. In the meantime (because it WILL happen!) give your little man a big hug from us.
*was looking at some of Ezra’s pictures and videos with my 5 yr old the other day. I explained what was going on and after a while he stopped asking questions, he was just silent with tears in his eyes. “Momma, let’s pray that he is back to being the funny and cute little guy there, and not sick.” Ezra- you have an ARMY praying for you!
I can only imagine how much you are both missing Charley, too. It’s so hard to be separated from one of your children to be with the other.
Is it possible for Charley and another family member/friend to stay at the local Ronald McDonald House so that you and Robyn can switch off visiting with him? Just a thought so he could be closer to you guys.
Our prayers continue for Ezra. He is such a fighter, he inspires me! Love how Mama Robyn knows whats best, a mother’s instinct is never off!
Hugs to you all.
Matthews Family…
We are lifting you ALL up in prayer, sending you lot of strength, love and light, from the Big Apple.
xo
PS, Ask the nurse for those soft foam mouth swabs to clean Ezra’s mouth instead of the bristles.
Still here, still checking several times a day….still praying…hang in there guys….give Ezra a hug for us…keeping the faith!!! ((HUGS))
Continuing to pray…
Lord Jesus, I ask you to place your Holy Hand on Ezra’s body. Touch him Lord with your Healing Power, speak Healing unto him. While he rests Lord let him hear the Angels sings songs that Glorify the King. Let his dreams be filled with playing, laughter and joy. Give him the gift of visions of Angles Praising You Lord. Rise him up Lord to Give you Glory All the Days of His Life. Surround him always with people who have Great Wisdom and give him favor and the purest of Godly Love. Bless Charlie Lord surround him with wise Nurses, Family and Friends who give him Godly Love and Favor. Bless all his days to walk with You Lord and serve the King. Start to bring forth his gifts that You knitted into him. Give him the gift of music and truth. Touch his father’s shoulder Lord with your warmth and healing. Give him painless rest through the night with a deep restful sleep full of your Words that minister to his Body, Soul, Heart and Spirit. Give him a New Song to sing Lord. One full of Rescue and Hope. Touch his mother Lord continue to give her Great Wisdom and Insight. Bind them together as a couple with cords that can not be broken. Give her Rest through the night with a never ending Hope of the Power of God and His Army. Let them have Great Favor from the ALL Doctors, Nurses, Aides and All who come in contact with them. Put your Oil at the door posts of each room they are in. Go in front and behind them and Guard them and Protect them from any and All evil. We Sing Praises to the King of Kings for Your Love over them, Your Healing over them and we Give Glory to You in it all. Blessed be the Matthews Family for they are Highly Favored. amen
I appreciate your heartfelt honesty about what is happening to your son and family. We are holding you close to our hearts here in Longwood…friends of the Bonhams in TN. Praying for your strength and fortitude for this journey…it has been so long for you already.
Kyle, Thank you for updating us…not really sure what to say, but I imagine there’s not anything you’re looking to hear! haha 🙂 You updating is OUR blessing. I praise God for the improvements and ask Him to heal Ezra completely and to ease the situation for you, Robyn and Charley too!
I can’t imagine who might be reading this and still feeling that the power of prayer isn’t mighty.
Continuously thinking about you and your family. Tell the lioness to keep it up! 🙂
Prayerfully, Amy
Thank you for keeping us updated, and helping us direct our prayers! Ezra is the cutest little Pooh I’ve ever seen!! =) How lucky he is to have such great parents. I understand the difficulties of having your family split between locations…I’m praying that you can all be reunited soon. It’s hard. Bless Robyn…she’s so strong!
Pooh Bear!
Kyle, I hope you aren’t beating yourself up for having to go out of town…I think I’ve been asked a ZILLION times, “how is he able to be in the hospitals 24/7 with Robyn”. What a blessing for laptops and iPhones and an office anywhere you need it. How you all haven’t gotten cabin fever in those hospitals by now is the mercy of God.
Robyn, you are one amazing woman (you hear that, what, about 10 times a day? lol). You two are a match made in Heaven…you will get through this together, stronger, wiser, more in love. Sing Ezra a Disney song from me…I still owe him a song.
xoxo
Kim’n’Larry
We are still keeping the faith and praying daily (numerous times) and will continue to do so. Praise God that He is the center of your marriage!
Sorry you guys are so tired…I can only imagine how cranky you guys feel inside without sleep and without the comforts of your house. Hang in there, as you said, this to shall pass.
You guys are in my prayers daily, I pray for healing and comfort.
**my grandfather was in the hospital a few weeks ago on O2 and the nurses used a small foam sponge to clean out his mouth, which is soft so maybe it wouldn’t cut his mouth.
GOsh, I feel for you guys…thanks for the update on how things are going.
My daily verse on my phone this morning says, “But you, O Lord, are a shield about me, my glory, AND THE LIFTER OF MY HEAD.” Psalm 3:3…
Kyle and Robyn, I pray that your heads are lifted today and that your energy is renewed ten-fold. I know how tired you must be physically and emotionally and ask God that spiritual strength surges through your bones making up for the lost sleep, crazy schedules and depleted emotions. I pray today for HEALING that I know our God wants and can do.
And on my morning drive as I once again struggled with my everyday plea of “God, why aren’t you healing him?? How do I pray? Do I think my prayer will change things?”, etc., etc., etc…..the Holy Spirit smacked me with these words: DO NOT PUT GOD IN A BOX. Do not think that He is limited to your thoughts of how many people are praying or are they praying confidently enough……….JUST PRAY WITHOUT CEASING AND WITHOUT DOUBTING – LEAVE THE REST TO HIM. So, this is what I’m trying to do and it is something I’m learning through my prayer time over your son. You guys are loved, and little Ezra, you will be healed.
I love Ezra’s costume!!! 🙂
We are praying so hard for you guys, even my 2 year old prays for Ezra and asks to see videos of him talking and playing. You have an army of prayer warriors behind you and lifting you up, and an even bigger army praying for Ezra and his healing. Your story is amazing, and we will never give up hope for you and your sweet boys. Be strong! Lean on Him! We are praying!!!
Praying!
Thank you for taking time to keep all of us updated. I keep your family in my prayers and ask that my friends do the same. Most of the time words are just words, but when spoken from the heart to Our Father, they are so much more than just words, they are true and sincere prayers of faith that He will hold your family in His arms and carry you all thru this. If you need anything back home in Tampa, my family is always here for you guys. Love, Stacey
You are doing amazing!! You ARE doing the right thing right now. What a fighter that little man is (as well as his parents). Way to stand behind him and give him the best chance possible. What a lucky little Winnie the Pooh to have parents like you! 🙂 In love and prayer – Linda Orrben, Minnesota
I was wondering how things were going since I hadn’t seen an update for awhile. Looking forward to seeing pics of Ezra wearing his Pooh Costume to celebrate a belated Halloween 😉
You guys are amazingly strong and inspiring. This is the first time I’ve “heard” you sound so tired. Ezra is always in my prayers, but I will say extra for you and Robyn for strength and energy.
Hang in there and your army of loving followers will continue to pray for you all <3 <3 <3
Thank you for blessing us with updates on Ezra. I have never in my life been so compelled to pray for someone, yet my words seem useless.
Romans 8:25-27 (Amplified Bible)
25But if we hope for what is still unseen by us, we wait for it with patience and composure.
26So too the [Holy] Spirit comes to our aid and bears us up in our weakness; for we do not know what prayer to offer nor how to offer it worthily as we ought, but the Spirit Himself goes to meet our supplication and pleads in our behalf with unspeakable yearnings and groanings too deep for utterance.
27And He Who searches the hearts of men knows what is in the mind of the [Holy] Spirit [what His intent is], because the Spirit intercedes and pleads [before God] in behalf of the saints according to and in harmony with God’s will.(A
Praying for all of you!
I found your site through a friend and I have been following you for the past month or so. Almost 5 years ago we had twin boys and one was born with a tumor in his liver which then began to stress his heart. We had a 3 1/2 year old daughter at home already. We spent 8 weeks wondering if our son was going to live or die then the next year following his treatments and follow up hospital stays. With all that I can’t imagine all you have been through, but your comment yesterday about wanting to be with Charley really touched me. Our son that was sick was Alex and his brother Jon and our daughter Rebekah were often left with family members and friends (thank God for them) and I worried that with all the time away from my newborn was a somehow damaging his bonding experience. Let me reassure you, he was loved and we were where we needed to be and now that the journey is over our relationship with all of our kids is great and Jon did not suffer from the time away from us. Keep being there of Ezra and know that Charley will be ok until you all come home together. Still praying for Ezra to beat the odds so you can have your miracle boy just like us.
Our family is praying for all of you, without ceasing.
I look at Ezra in that adorable Winnie The Pooh costume and I just want to sing Kenny Loggins Return To Pooh Corner song to him. Praying for you all.
Well, “uneventful” is good! I know what you mean by not knowing what day it is and what to eat, the hospital totally messes with your head!!! I’ll be praying for good white counts so he can keep fighting! He deserves a chance after all he’s been through! Glad to hear Robyn is being ferocious! You have to be,unfortunantly. Good for her!!!! Hang in there, I will also pray for strength for your family in this fight. Thanks for the frequent updates, I check all the time 🙂 I believe I have fallen in love with your little man!
Still praying. You guys are amazing. Our God is amazing. He is amazed by your faith in Him.
Bless you all and your “lioness,” Robyn…a mother’s love knows no limits….still praying like crazy for those precious boys of yours!
You are in my prayers every night. I look for your updates everday, sometimes every hour. I have never met you or your little boy but you have touched me very deeply. YOu are remarkable parents and your strength is unbelievable to me.
Hello Matthews Warriors!! I am so amazed at how strong your whole family is. God won’t give you more than you can handle and He must know that you are stronger than most. Please know that I am still praying and if there is more I can do, please let me know. Blessings in abundance to you and your “tribe”! Tanya
It was posted that there is an ARMY praying for you. That couldn’t be more true. God bless your family for showing us true strength and love. You guys are not alone.
This made me laugh so I thought I’d share 😀
“Knock, Knock”
“Who’s there?”
“Cows”
“Cows who?”
“No they don’t, they MOO!”
I pray that the Lord will bring joy into your life, through all of the pain.
It does suck. Praying for Ezra.
My 16 year old daughter was diagnosed and devinely healed with leukemia when she was 18 months old. Our family is in prayer for Ezra and your family.God is no respector of persons and if he can heal our daughter then Ezra shall be healed also!We attend the Grace Family Homeschool Co-op and families there are praying also. We look forward to meeting Ezra when he is completely healed and ready to run and play! We will continue to share his story along with our daughters in hopes that others will pray and know the power of our mighty God is real and strong. Many blessings to you all and much love, The Perkins family
Prayer will stay a priority for us!
Grateful to God that He gave you the strength and faith to hold Him high each day.
Your always in our thoughts and prayers today, tomorrow and more… Love you guy’s!
Aunt Judy and family
Have just become aware of your little boys fight of his little life….will add an extra prayer for him to all that are being offered up.
Just a note to say that your family is in my thought and prayers. I read your updates often. Lots of (huggs))
Sharon
Some things are more than beyond the sucking stage. And you are enduring the watch of a life which we do not what the next step is going to bring or not bring. I pray for you always, not only Ezra but you both, the parents. To have to see things you do not want to see and to have to keep up and wait patiently and to do the impossible to just keep going; I admire you guys and continue that you will find strength in God and in each other.