I’m back in Tampa today since I’m doing the Cure on Wheels 100 mile bicycle ride tomorrow morning. (You can still donate to that if you want, although it doesn’t go to Neuroblastoma specifically – proceeds support our local children’s hospital and Moffitt). Since the riders have to be there by 6am, it wouldn’t make much sense for me to leave Orlando at 3 in the morning to get there, and Robyn was gracious enough to let me sleep in our house last night and tonight so I’ll be [slightly] rested for the ride. Thanks, babe. I meant to be training this whole past month but obviously circumstances have not allowed much of that, so as my friend Kevin said, I’ll be “high on motivation, low on preparation.”
Being home is weird. I haven’t been home in almost a month. Everything is in perfect working order here. All the people who have been helping out with Charley have been also keeping our home in tip-top condition and it’s beautiful. I don’t know how we can ever repay – it humbles us to see this amount of help. The calm and peace of the waterfall in our back yard contrasts this feeling in my mind of being… off kilter I guess. I don’t know how to describe it really, but we just sit in limbo constantly with an unanswered question. I suppose that’s how life is, but this question of Ezra is wearing on us. Each day is wholly different from the previous – even if it’s the same, because now it’s the same a day longer. I feel apprehensive. I’ve been sitting staring at the waterfall for an hour just feeling all this. It’s such a gorgeous day and it feels strange to see so much beauty while feeling so much pain. I have no point, really, I’m just trying to pen down this feeling. It’s literally elation one minute slammed to deep hurt in the next, and everything in between.
We’re not really sure how Ezra is doing at the moment – there are a lot of factors in play. Yesterday he started talking a little bit again – he woke up and said “momma” twice. When Robyn came to the bed, he asked for juice. He didn’t drink much, but it’s something. Vivian, Robyn’s mom, and Tanya, her sister came by to hang with Robyn while I am back in Tampa. For a few hours they hung with Ezra while Robyn and I left to drive around and pretend like we have a normal life. Vivian said Ezra was again asking for juice, and drank a decent amount. That’s a big step!
At the same time, his liver is still extremely enlarged and not going down. They did an ultrasound today, so we should know more soon on that. It could be a massive tumor, or it could simply be retaining fluids. This can be a sign of a few things, but we’ll wait to see until we know more. It’s painful for him, and he keeps making little whining noises for hours on end, even with morphine, Benadryl, cartoons, my guitar playing, and Robyn and I hugging and kissing on him. That’s a sound that’s hard to listen to for hours knowing you can’t address the issue at the moment.
Charley looks great and he is growing like crazy. He is learning to sit on his own, and will most likely no longer need oxygen or the apnea monitor after his appointment in early December to check progress.
These are the best of times; these are the worst of times.
So happy you got to hear your little man’s
voice again. The silence from him must be deafening. Your family is on my thoughts alot.
I won’t comment here & say that I totally understand how you feel because I don’t think that anyone could fully comprehend it unless they’ve been there…
I will tell you have much my heart hurts for your family and that I’ve been praying like crazy for little Ezra and your family…
I forgot to write something…
I wanted to say that I’m so encouraged by Ezra’s progress that you spoke of…I have been specifically praying for him to start speaking and drinking. God is at work here and I pray that he does answer the prayers of many & heals Ezra this side of heaven…I’ll keep on praying
Thanks for the update. Glad to hear Ezra is drinking and speaking a little. Good luck on your ride tomorrow.
When I read that he spoke, and drank some juice, tears of joy swelled in my eyes as I praised God. Everytime I pray, for whatever reason, I pray that God will heal Ezra to grow up strong and be a living testament to the love, power, and grace of our Lord.
Praise the Lord for the sound of Ezra’s voice and the fact that he asked for juice and drank it. God is so good and totally there in your circumstances! Good luck and safe travels in your Bike Ride. Praying for Ezra’s healing and for your family. Thanks for the video of your waterfall!
Yes, God is definitely working in the midst of joy, pain, confusion, etc. I just pray you feel HIS presence in the midst of it all. Praise God that Ezra spoke and drank! Every step, no matter how small, is significant progress. I love all of you SO much and am standing, crying, praying, believing, with you. Everything I can do except be there physically to help lift the burden. Stay encouraged, sweet Kyle and Robyn!
hurray! i just know something huge and positive is about to happen. god has something amazing planned for ezra, and he is right there standing by ezra day in and day out. it’s the worst to see your child in pain, and i pray that ezra does not hurt, and he is not scared. i know i have said this a million times, but you and your wife are role models for faith and strength. for believing when it just seems to hard. you guys and your children are amazing,
Low comments so far. We must have all been at church. 🙂
So glad to hear that he is talking a little and drinking, that is certainly a praise. We are praying without ceasing and our older girls even had a bake sale/lemonade stand on this coldest day of the year (so far), and it was quite successful. They were thrilled to donate the entire $40 they made to the Zone fundraiser for you guys tonight. I was so proud of their willingness to serve and give. Keep holding on.
I don’t know what to say except still thinking of you all & praying! Good luck on your bicycle ride. I hope you have a good time (as good as you can) and of course I hope progress for this benefit iis made. I am excited to hear that Ezra spoke & drank juice & that Charley is doing so well. In praying I will ask god to rid Ezra’s body of the cancer and heal his liver. Bless you!
We continue to pray for Ezra and Charley and the rest of the family. Prayers for a miracle of complete restoration and healing for Ezra and continued healing for Charley. We also pray for strength and rest for you and Robyn. God bless!
A prayer for you to listen to
http://www.youtube.com/watch?v=_l09AJ9lXSE
I don’t know you, but I pray for you and your wife and your little sons. Keep the faith and know that God is mindful of you and your circumstances. They were His sons first and he knows and loves them and you. I pray for His will to be done and specifically for a miracle of healing if He wills it and for peace of mind for you and your sweet wife.
Continuing to pray for your little fighter and the family.
praying in south eastern Connecticut. Checking daily for answers to prayer – no matter how small. Stay strong.
First, thank you for the update. I can only imagine how this must be for you and Robyn…feeling the joy for one child and so much pain for the other. Please know that we are still praying for Ezra, for you and for Robyn. God Bless you, hold you close, and lift up baby Ezra!!!
Glad you & Robyn are allowing to get out of the hospital setting if just for short times. God’s peace is all around us, stop to listen to His quiet beauty. I previously worked in the critical setting it can be difficult surrounded by all the medical ‘stuff.” Ride for Ezra and all the other kiddos dealing with cancer. May you feel God’s presence as you feel the cool wind riding along the way. Constantly praying for you guys, the family and God’s awesome power of healing!
So glad to hear Ezra spoke some words and asked for a drink. Praying so hard for that little angel and for all of you. I’m so happy to hear Charley is thriving as well. Lots of love and prayers for the Matthews family. XOXOXOXO
Continuing to pray for your family from western pa. May God wrap you all in His strength, peace and love.
Our family continues to pray for Ezra to heal. What an amazing sound, to hear his little voice say “momma”. We will continue to pray for you all!
Praise God for the sound of Ezra’s voice, I pray that the issue with his liver is minimal and that we will be able to have some relief from his pain. So happy to hear Charlie is doing well, I pray for comfort for you and Robyn and healing for precious Ezra.
Still praying by the Spirit. Thanks for giving words to your experience, they are invaluable. So many of us in the body need your perspective, yet grieve at the price you and Robyn are paying to give it.
May the Holy Spirit infuse you all with life, health and peace.