Deacon is Home!

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Deacon was wrapped with a foam pad that contains medicine and then wrapped in bandages that he will keep on for several days. He had to endure one more burn tank scrub down but it looks like the worst is over. We will change his outer bandages every other day and keep his face clean and lubed up with Bacotracin ointment. He will go back on the 25th to have the foam pad removed and hopefully will be mostly healed at that point. He also has to do stretches to keep his arm skin from healing too tight as well as neck stretches to keep the skin flexible. He is not expected to have much scarring, but only time will tell.

Here’s our little guy…

He is in high spirits, just a little emotional at times and sad to see me go to the hospital to be with Phoebe which is the worst part about it so far.  Fortunately, Phoebe is doing GREAT and when I saw her today laughing and joking and having a good time at the hospital it set my heart at ease a bit and made me feel okay about letting her Grandmothers stay with her for the weekend so I can be with Deacon a little more.

Benjamin is doing well, he feels fine minus some residual itching and should clear up very soon. I’m not sure why God has allowed all of this into our lives, but I know He is good and those purposes will be revealed in time. My hope is that He gets all the glory, because as horrible as these things seem, the beauty far outweighs the ashes and His grace for each moment has been something to behold.

~ Amey

About Amey Fair

I am Amey Fair, wife to Nathan, and home-educating Mom to Benjamin (9), Averic (7), Deacon (4) and Phoebe (2) . Phoebe was diagnosed with a rare childhood malignant brain cancer called Atypical Teratoid Rabdoid Tumor on January 1, 2012. She had complete resection surgery to remove the tumor on January 4th and began chemotherapy using the Dana Farber protocol on January 26th. A few weeks ago I was sleeping in the chair next to Phoebe's bed in the hospital when I heard her little voice drawing me out of sleep. It was 3 am and it took me a minute to shake off the slumber. "Mommy I'm a mean girl" I thought she said. "No Phoebe, you're a nice girl!" I replied. "No Mommy, I'm a MIRACLE!" Phoebe said. "I'm a MIRACLE, I'm a MIRACLE, I'm a MIRACLE!" she continued on. My tears welled up and spilled over as she made her declaration. Phoebe doesn't know the word "miracle" nor the concept, she's only 2. It was as if the Lord was speaking through her like a prophetic utterance. She fell right back to sleep and I sat there awake, lingering in the magical moment. Less than 40 children are diagnosed with Phoebe's type of cancer in the U.S. each year. This is why it's called "ATYPICAL Teratoid Rabdoid Tumor". So, I have titled this blog in honor of Phoebe, our "Atypical Miracle". We are YWAM'ers, serving in missions through Youth With A Mission since 1998. Before returning to the states 1 year ago, we lived near Guadalajara Mexico for 3 years. It was during our year of agricultural missions training in Waco, TX that Phoebe began exhibiting symptoms from the pressure of the tumor on her brain. Weight loss, lethargy, extreme thirst and vomiting were her symptoms. We have been granted sabbatical during this time to focus on Phoebe's intensive chemotherapy treatment and are renting a home in Dallas near the Children's hospital where Phoebe is being treated. Like the woman who touched the hem of Jesus' robe in Luke chapter 8, we cling to Him, knowing that He is Phoebe's healer. If we can just touch Him, be near Him, bring Phoebe to Him each day, we have hope. He is our hope. Thank you for coming along on this journey with our family. It's therapeutic for me to write it all out, and in so doing, I hope God will use it for His glory.

22 responses »

  1. Praise the Lord that He is always there and in the healing business,,,,,,,Thank the Lord for this Miracle….!!!!!!

  2. HE is good! Thanks for showing us Deacon’s progress. He is a cool mummy man! Praying for stretching skin and no scars! The hardest part in all this as I pray for you is knowing that you want to be with them all. So glad for the Grands so you can be with all three of the boys!
    Glory be to the ONE on High. His mercies are new every morning!

  3. Amey. We do not understand. But we do know God has us in His hands….the enemy knows the good you have done and are still doing. Hold on my precious bro and sister. Victory is here. Just keep trusting and believing. Prayers are going up every day here in Ga. Pam

  4. What a darling family you have! I know that God is using you all to His glory as you spend time with people you never would have met in other circumstances. Thank you for your faithful witness and your enduring spirit. Praying for all of you…

  5. Watching the Lord work and move in your family is such an encouragement to me. We pray with you all as you are walking through this time of hard trial . What a wonderful testimony of Gods power and desire to help those who call on Him. Jesus is truly faithful! Thank you for sharing with us all.

  6. As a boy-Momma, I cannot help imagining how DIRTY those bandages are going to be in a week!! Deacon looks great. Our love to all the guys and to Phoebe Girl.

  7. So happy that you Benjamin is okay and that you have Deacon home. He looks good considering what he’s been through, praise God that his injuries weren’t more severe. I’m praying for you all, I hope Miss Phoebe continues to do well and that you have all 4 kids back together at home very soon. God Bless,

    C.O.L.E. Prayer Team – http://www.colesfoundation.org

  8. Amey…bless your sweet heart, as I have been keeping up with all your posts must ; it has come to mind this time, with all three children in trouble, that you must be a “Job” and God has great things in store for you and yours. You all are always in my prayers and thoughts. Much love to all The Fairs!

  9. Glad to hear Deacon is better.. A big ‘ol
    YIPPIE! from Texas.. Amey, our stories are very different, but I know what its like to have an ill child and go through the up and down emotions that come along with seeing your child sick. From the bottom of my heart, I wish your family health and peace. You’re brave to share your story. I don’t know you personally, but there’s nothing but love in my heart for you and your children. I pray that God’s grace and mercy fall upon your family.

  10. Praising God Deacon got to come home, but bless his heart, praying he heals quickly and without scaring. Also, thankful that Benjamin is doing better too!! Always praying for your family and Phoebe, but amazed that you take all of this in stride. I am not saying you aren’t overwhelmed at times, but you all seem to take a step back a look at all this as a learning experience. Not very many people, and I mean many Christians, can do this. You are teaching others, through this web site, what God is teaching you. Awesome!! God bless!!

  11. Satan tries to get to those in God’s will where he can hurt us the most. Usually through our children and the ones we hold most dear. My opinion only. Praying for hedges of protection around all of you and bands of angels for battling against Satan’s arrows. Also praying for Jocelyn and any aftermath of all this. What a fright for all of you. Praying, Praying, Praying.

  12. As one who endured a similar burn, it is unclear to me how Deacon came home so soon! Praise to Jesus! Now your young men will remember these tender mercies, certain to be vigilant in days ahead. That is truly beautiful. Tell Deacon I went through the baths in iodine water, and they actually became fun.. (and no scars :).

  13. What a sweet boy… He looks like he’s in good spirits despite what happened. I am praying for his healing, Ben’s healing, and of course Phoebe!

  14. God bless you all! May He continue to pour out His grace on each one of you. Still praying for you daily.

  15. Praying for healing for all – physically and emotionally! God is good always and He must have great things planned for you and your family. He has a plan for each of you and these trials are making each of you who He wants you to be and to be a witness to those around you – and from what I can see you are being a mighty witness! May God continue to bless you and give you the strength and healing that you need.

    Proud mom of Hannah a 7-yr old, 5 year cancer survivor, and her siblings who also endured much, Sarah, Caleb, and Noah!

  16. Amey, I don’t believe I know you or your family, but several of my friends do and have posted your journey. I want you to know I’m praying for you and know that you have inspired me. Your trust in God to believe He’s good, no matter what encourages me to step it up with Him. I have four kids too, ranging from 6-22, and I can’t even imagine walking your journey. I am confident, that as you, I would learn to trust more, rely on Him WHOLEY, and recognize all the wonderful support/love of family and friends that sometimes is only seen in these kind of struggles. Perhaps someday we’ll meet, but in the meantime, I will pray.

  17. My heart hurts for this beautiful little boy. Praying his pain is minimal and healing is quick. Keeping all of you in our prayers.

  18. Praise God!!
    I am glad he is on his way to healing. 🙂 Children heal fast I do believe there will be no scarring. Many years ago, like 25, my aunt spilled boiling hot water on her leg and had many skin grafts, and there was minimal scarring, so with today’s technology, I do believe there will be no scarring. 🙂

    I am so happy to hear that Phoebe is doing well! Thank you Father. He knows just how much you can handle and will not give you any more than that.

    Praying and praying for all of you. Keep looking at Jesus and don’t remove your eyes from Him.

  19. Dear Amey and Nathan,
    This year has been such a trial for all of you…..it seems crystal clear to me that because of your great testament of faith throughout this time, which has affected so many thousands of us out here, that Satan has gone into overdrive in an attempt to destroy all that you have built. HE WILL NOT WIN!!!! The countless prayers and the love and grace of our Lord Jesus Christ will provide the armor necessary to bring you all through these tremendous challenges. Know that God has you in His embrace as do we all. Much love to you, dear ones.

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