So… hey… where’s Charley been all this time we’re stuck in grating limbo in Orlando? Well – that’s a story you’d be impressed to hear. So I’ll tell it. We’ve been in Orlando 3 weeks (well, we were home ONE day in there) with Ezra. Charley has been at home this whole time, hanging out with a parade of amazing women we know. Vivian, Robyn’s mom, flew in a couple weeks ago and is staying here almost a month carting Charley around to appointments, whipping his nursing care company into shape, and keeping our house running while we’re in O town. On top of being here as well when she can to see Ezra. We offer a huge thanks to Joy, Kristin, Kim, Nicole, Debbie, and whoever else is taking shifts loving on Charley. I don’t know what we’d do without you guys.
Charley is doing GREAT and he’s babbling, smiling, and having a great time at home. He’s working out his little muscles and seems to be coming along with absolutely no complications from his early entrance into this world. Joy texted me the other day with an audio clip of him babbling and talking in his little baby voice… and sent the opening picture in this post along with it. It was the first time I’d seen him smile. We can’t wait to get home to him!
Sometimes I think by the time we can give Charley the parenting he deserves he’ll be a year old.
There’s so many weird mental levels to the situation we’re stuck in. There’s a guilt at not being able to be with Charley which we feel whenever we think of him. A little sadness with that too. On the Ezra side – it’s the strangest feeling. We’re basically waiting to find out if our son will live or die. We have faith God can heal. I pray for it every day. Many times a day. Like I’ve said before, we also know God calls people home at all sorts of ages, however fair it may seem to you or I. And right now – we’re just waiting and praying. That feels weird, I’ll tell you. He hasn’t gotten worse, which is good – and he’s only very slightly better. We are cautiously optimistic.
Things are much the same with Ezra – his platelets stay a day or two and disappear. His red blood cells (hemoglobin) seems to be staying better, but he needs them every other day still. He’s on TPN which is IV nutrition, and lipids as well (IV fats). He still hasn’t talked or eaten anything – even though our friend Jamie (all the way from Seattle!) had these awesome cupcakes sent in for him (don’t worry, Jamie, we’ll see they don’t go to waste). We’re getting him to take a few ml’s of the Nifurtimox each day (a few have asked – no, it can’t be delivered via IV or any other way) but it’s really tough for him and he isn’t able to take the full dose. We could do an NG tube but it’s risky for infection since he’s JUST out of chemo. We prefer to keep trying by mouth – we don’t mind extra work on our parts obviously.
His eye seems a LITTLE smaller but it’s tough to tell. It doesn’t really open from the tumor stretching his skin on that side of his face. I hate cancer. It goes for the things you love and tears them apart. It tries to impress itself on the beauty of a family, a man, a woman, a child. It saps your energy, it robs you of your nutrients, it kicks in the door of your house and sits itself right at your table in the middle of dinner. It comes in the middle of a joyful time in life and punches you right in the gut. It’s pure evil.
We are most likely going to have to be here a minimum of 2-3 weeks more. As soon as his white cell counts start going up we can start another round of treatment and continue the Nifurtimox. That should be in the next week, but he’s weak now and will not be ready to go home by then. So this hospital stay is looking like it will last at least 6 weeks. He’s usually pretty good about getting his white counts up, so we’d be starting most likely not this coming Monday but the one after that.
I should take this time to bring up a note on treatment options. And believe me – this is directed to no one in particular. For every one of you who has suggested an alternative treatment option, there are at least a half dozen other people who have emailed us the same option. We appreciate your concerns, and we appreciate the research and suggestions. I guarantee you since the moment Dr Rossbach sat us down over a year ago and told us our beautiful 1 year old boy had a high-risk, stage 4 cancer which more kids die from than live through – we have researched and read through every available treatment option. The parents of Layla Grace Marsh (another beautiful Neuroblastoma child who passed just in March this year) pretty much summed up my feelings on alternative treatments perfectly in a blog post they wrote in January – if you’re interested in those thoughts, you can read through Ryan’s post.
Support has been pouring in from all over the country and world still. We’re floored with the response. Ezra’s story and life are affecting family lives, prayer lives, and thoughts on life in general. I believe I’ve said it before (but I couldn’t find the post on the blog so maybe not) – but early on in this Robyn said she prayed simply that this situation would have a positive lasting effect on people. I see that happening daily. Let me challenge you all with this – yes, sure, hug your kids and your mom tighter and be glad for what you have. But please, don’t let the realization from this be that you have a lot and you’re grateful you don’t have to feel this pain. I pray people would understand a simple thing – the world is not all butterflies and roses. There is real hurt and real need, and “someone else” is not going to address it. Please, be constantly working to better those you come in contact with. Help people. We all have different ways of doing it, but let it be a little bit of a sacrifice, and let it not be just during jolly times of the year to assuage your desire to be a “good person.” If there was an emoticon for “spoken with conviction” I’d toss it at the end of this paragraph, but I couldn’t find one in the list.
Packages, comments, Facebook/Twitter shares, and emails have been flooding us – even Disney World sent us a package full of collectible buttons and signed pictures from the characters written to Ezra (thanks Jack for taking point on that barrage of communication to Disney).
Robyn is cleaning our hospital room as she does every morning, and I’m sitting in my “office” about to press send on this update. See ya guys in a day or two…
You could not have said it better Kyle. Thank you for the post today. Hopefully your story WILL inspire us all to be better people to each other. To help people. To sacrifice. I know it has done that for me.
From my family to yours, lots of love to both your kids! Keep fighting Ezra!
So happy to hear Charley is doing good. He is a week older than my son. I am still praying for Ezra’s to get better. I know how short life can be, and embrace what you have, and love the people around you. and let them know how much you love them. I just wish everyone could learn to do that, and I hope everyone will. I love reading your blogs, updates. Sometimes I forget, along with everyone else, and we all need a kick start at times. Every time I check my email I’m praying for good news from Ya’ll. Wished there was something more I could do to help. You keep fighting little man, I’ll keep praying daily and often from Texas.
I know you guys dont know me I sw your story from a blog i follow lil tulips, it touched my heart and your family has been on my mind and in my prayers ever since! I can’t imagine how you guys are handling all of this so well all i can say is God is obviously working in and through you guys! Love this post about sacrafice. We just had our 1st baby in march then 2 weeks later found out my mom had stage 4 signet ring cell stomach cancer 8 weeks ago they gave her 6 weeks to live, I have been having a hard time w/ this and you start to feel sorry for yourself and question god then i read something like your situation and think how selfish of me to think we have it bad when other people are out there dealing with way worse! Again I cannot imagine the pain you are going through as being a new mommy, I am praying which is all we can do when medical things get to this point, but miracles do happen and i hope they do for your family. I would love to help your family in any other way i know again we have never met but you just feel so close to my heart!! Praying for a miracle!!!! love the Whan family Fort Wayne, Indiana
I feel the pain – I certainly feel the pain. I sit at my desk at work reading every single word you write -wishing, hoping and praying that there was something i could do. I hate it – I hate cancer. I want so badly for you to be at your home with both of your boys enjoying this thing called life! I have been hugging, kissing and loving on my children more so than ever while I have been traveling this journey with you. It’s bittersweet. My heart swells with emotion in all directions – i do not have the vocabulary to put it all down in words. I don’t think I would be doing as well as either of you if I were witnessing my child go through what your sweet precious Ezra is going through – I WANT TO SAVE HIM!!!
I have been doing my part in trying to be a better person and enriching other people’s lives even by simply trying to bring a smile across their face. I have so much empathy – I want to make it all go away for you. I HATE CANCER – I LOVE EZRA and seeing sweet Charley’s smile brought a huge smile across my face. So happy that he is doing so good. My love heart and prayers are pouring out to you……………….
well said Kyle 🙂 (((hugs)))) to you both and Ezra –thanks for this update. love the Powell Family
Kyle, Wow. You spoke exactly what I told my husband last night. I have been following your story for about 2 weeks now. I found it through the LGCCRF on FB. I have been burdened for each of you since I read through your story. I’ve wept and prayed and battled alongside of you even though I’m in Ohio and have never met you all. I started crying last night as I shared with my husband what was on my heart. My husband then started crying. He knows the Lord has placed a burden on my heart to pray for people in troublesome situations. It almost always has to do with children and/or social justice, and it’s usually for people whom I’ve never met. I just cannot stand to know that any child is suffering. I do believe God works ALL things for the good of those who love him, yet it’s still difficult to fathom that at times. You see, about a month ago, I told my husband that I wanted to volunteer at Children’s Hospital here in Dayton, Ohio. It is only 8 minutes from our house! The Lord keeps stirring me up to mourn with those who mourn and rejoice with those who rejoice. We have a three-year-old son and a baby on the way. We’ve not walked your journey, but I don’t want to ignore the pain that other families are facing. Beth Moore says, “Kindness looks pain in the face.” We should not be afraid to stare directly at this cancer or the effects of it. It needs confronted, and I want to come alongside in any way that I can. I LOVE reading to kids. Before staying at home, I was a reading specialist at a charter school in our area. I miss reading aloud to kids. Obviously we do a lot of that here, but I still miss the interaction with different children! Last night I told my husband with tears streaming down my face, “I know we don’t have a child with cancer, but that doesn’t mean we sit back and ignore it.” Not that we ever intentionally ignored it, but it’s time to confront it face to face. So, I’m contacting our local Children’s to see if I can read to the kids who are staying there. Sometimes kids simply need a good book! I’m only one person, but I know the Lord desires to use my gifts/talents/burdens to bless others. You would not believe what He’s done in my heart over the past year, and Layla and Ezra have both played a major role in HIS purposes. Also, what you wrote today completely confirms what I want to do; thank you for your exhortation to others. Please give Ezra a kiss and hug from our family. (I hope to get a card to you all very soon.)
They’re both so perfect and beautiful…I love Ezra’s pic, His one eye is wide open – watching you. I will continue to pray for that sweet baby. I LOVE your description of cancer – perfect. I HATE cancer so much. I walked thru it with my sister and her little boy, (her husband passed over 5 yrs ago). Your description was exact…It is EVIL. I know so many who are going thru this right now, a place I don’t want anyone to go, yet its happening. I do know that there’s peace and HOPE, it carries you, God carries you – even when it seems you can’t go on anymore. Hope…keep it in your heart…he loves us so, even when we don’t understand. I will continue to pray for you, Robyn and your beautiful boys. God Bless you!
Your wife’s prayer is the same as mine. I feel like God wants us to DO something with our situation…waiting prayerfully for Him to show us just what that is.
Thank you for posting the picture of Charley…what a cutie….he is getting so big. I”m sure that Vivian has been enjoying her time with him, what a blessing. Praising God that his health is improving, even if slightly. That’s still good news. We are still Praying for a miracle from God to wipe out the cancer and give Ezra a new life in Him, healthy and whole. We are keeping the faith and always having positive thoughts. I am thrilled that Ezra is doing well as can be expected… What a strong young man you have. Thank you for keeping us all updated Kyle. I look forward to reading your blogs, facebook messages, and posts on Care Pages. I not only think you should write a book, but maybe there can be a Movie made that would bring awareness to Neuroblastoma and the children that suffer. I Pray they find a Cure for Cancer. Yes, it is an ugly beast…it is the devil…But we have a Mighty and Merciful God that loves each one of us, and He is in control. We need to just continue to Pray and do the best that can everyday. Love one another, and try to make a difference in doing something special for others…Yes, Tammy even the Smiles do wonders. Love You Guys !!! Hugs & Prayers !!
Judy and Family
Again, I am in awe as I read your post… Continuing in thought, hope, wish, prayer and thankfulness. Thank you for this and every update. It is great to hear that your other child is doing good through all this. I HATE CANCER also… God Bless your family.
Thank you for taking the time to share with all of us and to update us as during these times. I go online every day to see how Ezra is doing. We will continue to pray without ceasing, not only for healing for Ezra but for peace and protection for your entire family. Praise God for Charley’s health and little smile! He is precious!!!!I bet Ezra loves to see photos of his baby brother! Keep your eyes focused on God. . . He IS in control. He loves you all so very much!
I don’t know if you read all of these Kyle but everyone has said what I wanted to say. I hear GOD calling me to do something more meaninful with my life & I know it has to do with how sensitive & how much I feel for other people in pain and in trouble. I have ignored it because it consumes me. I have to find a balance as I’ve said before knowing your story HAS impacted me and made me a better person in my own life and to others. Soetimes it’s just giving a kid a quarter at work that wants to play one of the video games, or giving a lady whos house just burned down free lunch. Theyre little things but they make people feel like theyre not someone cares 7 they’re not alone. You all invade my thoughts throughout the day & night. On all kinds of levels. Since I don’t know how to turm my passion into helping others as a career it can start as my hobby & I start with you guys;0) Anyway I can help you, and help the fight on cancer I will. I think about Charley too & I am thrilled with his update! THANK YOU! Knowing your story has helped me appreciate my life but I know it could happen to ANYONE including me. No one is immune to tragedy & we are ALL GODS CHILDREN. So we must live up to that and fullfill our obligation to help one another! I have been blessed with caring people in times of need in my life so I am just paying it forward in whatever way I can. Once again an amazing update! Thank you!!! Prayers, thoughts and spreading your story continue on this end!
I will tell you as a babysitter once told me about Mariah. She does not need you know as much as she will later on in life. So plese dont worry about Charley. God has given you wonderful angels to take care of him while you are taking care of Ezra. You will be home to him in due time and will be able to be awesome parents to him as you are to Ezra right now.
We are praying for a true miracle from a Strong and Mighty God that moves mountains!!!!
God Bless You Both!!!! Just keep singing to Ezra!!!
I am so glad that little Charlie is doing good! Would love to see that little clip of him! What a little doll and I also want to THANK those ladies for helping Charlie and your family out!
Its so nice to see Ezra with his eyes opened and also watching his little shows he likes! Praying to god that both children are watched over and Charlie continues to do well and that Ezra gets his strength back and that a miracle happens. Please dear god help these children out!
We (all of the people out here) love you and your family so much! We are grateful to know such a loving family!
((((((((Love And Hugs))))))))
Very nicely written J
I am so glad to hear that Charley is doing so good! My youngest son was actually born on Charley’s due date (July 21st). I see my son in the photo of him laughing and smiling. I know it must be hard to be away from one son while caring for another. It sounds like he is in great hands. I will pray that the enemy with stop attacking you with guilt on this.
I am also so glad to hear the progress – as it might be slight – that your precious Ezra has had in the past couple of days! God is so amazing! His love and kindness reaching beyond the beyond for us. I honestly do have a changed heart because of the Matthews… I pray different, I love different I have faith that is different. Not that I haven’t always prayed, loved and had faith… its just different.
Oh course you hate cancer! We hate all things of Satan! Every word you described it being is words we describe Satan being! It is Satan’s work! But we know we can fight the disease just the same way we fight Satan, with GODS armor! The world isn’t all butterflies and roses that’s why we are to be in the world and not of it. God has a purpose for each of us. Ezra (and your family) have been and will be used greatly for that purpose. He is singing over you!
Thank you again for the update. Keep up the good spirits. God is holding you and using each of us to pray for you in this time. I really wish there was more I personally could do. But my use in all this by Him is prayer.
Love and continue prayers coming from Seattle….
We continue to pray for your family & that God’s will be done. Cancer sucks
Charley is BEAUTIFUL….What a great picture of him. Ezra is looking mighty handsome himself. I know you must be tired but God is always closest when we are at our weakest. There are alot of amazing people out here praying for your family. Thank you so much for your honesty, and allowing us to go through this with you. I pray every morning and evening for you guys….<3
Kyle and Robyn –
This post has me sobbing, as most yours do. You talk of people all over the world contacting you and I actually live on your street. I just found out about Ezra’s current condition through a friend of mine (Mandy G.) through Hope for God’s Children. I am SO saddened! Your words are perfect about cancer. Not only can I not imagine how you are feeling right now, I also can’t imagine God’s plan, other than feeling blessed to have met Ezra. My son has played ball with Ezra several times out on the street and ADORES him!! Ezra is the sweetest boy and we are praying for him, for your family, and a miracle!
I know you don’t know me but I am able to help. I know you are fairly new to this neighborhood, but I have lived here almost my whole life and there are some really great people who would be happy to help. I am able to help out, if you need errands, or cleaning. I work at an elementary school, so I am good with kids but have no medical training. If you need meals for the staff or you or things for Charley, I can try to get the neighborhood together for some things or ideas.
Please let me know if there is anything we can do to help you.
I am praying for your family.
THANK YOU! THANK YOU! THANK YOU! For this great update. I think you have really put things well in that last paragraph! I want to tell you, my 13 y/o son bowls in a league on Tuesday nights. When things had taken a harsh turn I had spent that Tueday, and Thursday, and part of Saturday fasting. The Tuesday I had fasted I had not slept more than an hour in about 24 hours. One of the guys that bowls on another team was talking with us and said I looked really tired. So I told him about Ezra and fasting and praying and everything. He and his other teammate were real quick in leaving when I brought up praying for a miracle. His team mate quickly said “well all you can do is pray and hope, ok we gotta bye” and off they went. I have a feeling God makes them a little uncomfy, I could be wrong, but that was the impression I got. FIRST THING Tuesday night this week One of them had come up and asked how “the baby” was doing. So I got the chance to tell him how awesome God has been this week and that Ezra opened an eye that day and was watching Winnie the Pooh, and everything. He asked if it was ok to sleep again because he hadn’t slept well since I had told him about Ezra the week before. I will be looking forward to continuing little by little telling him about our AWESOME GOD and all His works in Ezra, Charley and your family. I thank God, in the beginning of all my prayers for Ezra, for my boys and the absolute JOY they bring me. My boys are 13 y/o and almost 20 months. I follow it with my prayer that God grants you the joys of your boys growing up together. The joy of thier laughter when they play together and the sounds of their little feet running after one another. God is GOOD! No matter what He does and what HE chooses for His will, God is GOOD! I will continue to pray that God brings total healing and restoration to Ezra and Charley and together they grow old and wise with grandchildren to tell thier stories to. God bless you guys!
We’re praying for Ezra and your family constantly (including crying alot too). It’s so difficult to pray and wait on God and watch loved ones suffer. We agree He is sovereign and..even if we don’t like or understand the outcome. You put it perfectly…as you often do…cancer is pure evil!
Thanks for the continual updates. I know for my family, little Ezra’s plight has made our prayer life MUCH stronger. Thank you again.
I am praying for Ezra. I understand your feelings on alternative treatments, and wish I could give you the kind of info Layla Grace’s family wanted: scientific studies. Unfortunately, there are few because there is no funding for them unless a pharm company picks up the idea and looks into it, but it can take years to isolate the different substances in anything natural and figure out which one – or comination of different ones – works for any particular disease.
I do know two families – one personally – who chose natural treatment options for their children with GBM’s, and of their peers who were in St. Jude’s for GBM’s at the same time, they are the only ones still alive. Their initial diagnosis was 2 years ago. So it is possible, although it does require a certain suspension of disbelief. But I think when you are looking at very limited options it might be worth thinking about.
Thank you Kyle for your post. Being a father of 2 toddlers, your story has touched me very deeply. I told my wife Amy that I have cried more times in the last few weeks than ever before. We are constantly praying for your beautiful sons. The video of Ezra praying is amazing. Faith like a child. In the name of JESUS, please heal Ezra’s cancer.
Good Morning Kyle, Robyn and Ezra…Just popping in to say good morning and check on you. Please give us an update when you have the time, I know life is tremendously busy right now for you guys. Your family at GFC is still praying for Ezra’s healing as I am sure alot of others are. Give yourselves a big hug and hug that baby for us. If you ever need anyone to help with Charley, to run to the store, relieve someone for a few hours, or anything for Ezra or you two (and yes I will drive to Orlando) please don’t hesitate to ask. We all with you, praying as hard as we can. I ask God for a miracle daily for your family…and I still believe he can offer it up. God Bless you in these trying times. ((HUG))
Greetings Matthew Family,
Please let me introduce myself. My name is Evangelist Carly Searing.
I have recently been asked to keep your family and your boys in prayer. Robin Bethune shared with me a link to your care page. She heard about your story through Grace Church and some other people. The night before Ezra watched Winnie the Pooh I prayed over his photo. I believe there is no distance in prayer. I may not be able to be with you to pray over your son, but I know God hears and answers prayer. How precious it was to see Ezra praying for his healing as well. I do believe God heals today. We are praying for a miracle. I have placed his care page on the ministry page on fb and my personal page. Many people have been praying for him there as well. I hate cancer and I will continue to pray for others with this illness. I have seen people healed and I pray God will answer all of our prayers for Ezra.I will also keep Charley and all your family lifted up as well.
With God’s Love!!!
I keep coming on here to check on Ezra. I am praying for him and your family every day. You are two parents that I am in awe of. I pray God will give you and Ezra the strength and love you need. Please know that you are thought of every day from near and far.
I come here daily, well twice a day to check your updates. It has been 4 days now. Still praying as many others are. Please let us know how you are…((HUGS)) and Blessings!!!!!!
kyle and robyn and of corse ezra and charley
praying for you guys everyday i cant imagine what it would be like to be you it seems like just yesterday it was ezra’s first easter with us and now everything just moves so fast you guys are so strong and have such a stong relationship with god and i can see it in each one of your post its so amazing and uplifting all i can do is pray so thats what im am going to keep doing love you guys
I do not know you personally. I heard about your story from one of my friends who recently moved to the Tampa area. As brothers and sisters in Christ, my heart is bursting for you. I read your posts daily and pray constantly for Ezra and your family. The video of his prayer is so amazing. Thank you for sharing your journey with us. I will be better for it; I promise. You all are truly an inspiration about what is important, and that the Lord will always be with us. Please give Ezra a kiss for me. Our God is mighty to save. Praying for a miracle from Fayetteville, Arkansas. :):)
My heart is aching for the both of you. I cannot even imagine the pain. Sometimes there are no words. I have 4 kids 3 boys and one girl. My 3 yeard old son was in the hospital for 7 days he had a unknown virus and pneumonia at that time, and I remember going in the bathroom and just crying telling god to please, please make my Adrian better. Thank the lord he did. Reading this tears me apart-I am at work right now and reading this is just so heartbreaking. Only words that come to my head is why? Your baby was so young, so innocent-I am so deeply sorry for your loss…I pray that God wraps his precious blood around your family and protects and guides you through this difficult time. God must of KNOWN this little guy should be in heaven…until one day we will know. Bless your family. I will be saying prayers for you-and there is one more little angel in heaven tonight….my condolences to all your family…take care.