Jul30

Update

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Phoebe is doing okay. She had ups and downs todays, but the good thing is that we found out why her tummy hurts so much. She has something called C-Diff, an hospital infection in her bowels that causes horrible cramping and diarrhea. It is easily taken care of with antibiotics, but gives us an explanation for her fever and discomfort in many regards. She has slept quite a bit, but we also see moments of lucidity. Breathing in each moment..

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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.

21 responses »

  1. Thank you for taking the time to update us!

    Sent from my iPhone Cheri Perry 1-888-249-9919 You can get everything in life you want if you just help enough other people get what they want. ~Zig Ziglar 1927-2012 Rest in Peace dear friend!

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  2. Your family is in my thoughts and prayers. Phoebe is so beautiful, and her little life has influenced so many people. Give her hugs from us all.

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  4. Thinking about you and praying constantly! Your updates and pictures are so priceless- thank you for sharing with everyone.

    “To You, O Lord, I call, My Rock, do not be deaf to me….Hear the voice of my supplications when I cry to You for help, when I lift up my hands toward Your holy sanctuary. Blessed be the Lord, because He has heard the voice of my supplication. The Lord is my strength and my shield; my heart trusts in Him, and I am helped. Therefore my heart exults, and with my song I shall thank Him.” Psalm 28:6-7

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  6. My heart aches for each of you. I am praying that the Lord holds each of you, surrounds you with his love and super natural comfort. Praying that somehow there can be moments of joy and cherishing Phoebe, that the grief won’t swallow up precious moments together.

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  9. We are standing in prayer with you all too. Phoebe has touched our lives deeply…and we have never even met her. My children pray earnestly for her. May love and grace flood over you all as you lean upon Jesus.

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  10. Praying for peace & rest for your beautiful child & her family. I know how very tired y’all all are. Glad she’s sleeping peacefully now. Love & blessings, Elaine

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  12. I happened upon your website while I was doing geneology research weeks ago. We have children of the same age, which really grabbed my attention. I haven’t been able to stop thinking about your family, and mostly your daughter, since- my heart breaks for you. I can’t imagine the pain each of you is in right now. I wish I could do something to help ease it since words are not nearly enough. All I can offer are prayers that each of you (and especially Phoebe) finds some peace in the days and weeks to come.

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  15. God has asked my family to fast for Phoebe on Thursday(tomorrow). We are excited about this and believe that God wants to do something amazing! We love you and your family and our heart breaks for you! Looking forward to the Phoebe-fast:)

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  16. I continue to pray; first, for our little Phoebe, then for the boys (they must be really struggling with this) and then for you two. You are all enduring the unendurable.

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  17. I continue to pray; first, for our little Phoebe, then for the boys (they must be really struggling with this) and then for you two. You are all enduring the unendurable.

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    • I continue to pray; first, for our little Phoebe, then for the boys (they must be really struggling with this) and then for you two. You are all enduring the unendurable.

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  20. Saw tonight’s update on Facebook. Yea!! So glad she is better. I am praying y’all home now ASAP tomorrow. And restful sleep for all of you.

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