Aug23

Yesterday’s Update

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She seems to be tolerating the radiation so far with minimal side effects. She sleeps more than usual. She is often irritable which makes it difficult to take her out without a scene, so for now we are sticking pretty close to home if not in Dallas for radiation. Thank you all for thinking of us and praying for Phoebe. Everyone has been wonderful to our family, and we feel blessed to feel so loved.

-amey

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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.

15 responses »

  2. You have been in my prayers, I have adopted your family in my heart. I am coming to Dallas for a few days and will feel even closer to you all! Having had two daughters with tumors myself, I have rejoiced and hurt through your journey. Many of us do not judge the rightness or wrongness of your decisions only praying for Father God’s wisdom and strength.

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  3. Morning, Amey and Nathan — quick post to say we are continuing to pray with you for miss Phoebe and your family. Praying God’s hand of peace over your family and for tangible evidence of HIs glory and goodness in your midst. Praising with you that the radiation is having minimal side effects. Asking that He would smooth out Phoebe’s irritations. Affirming you as you walk with her and thanking you for being a strong witness of walking by faith and trust. bless you — Jeannie

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  4. Good to hear from you, Amey, but TOTALLY DO NOT post if it takes away from time with Phoebe and the rest of your family. We are all praying and will continue to pray. We know you appreciate all of us. Now go and be Mommy.
    Much love,
    Suzy Finigan

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  6. We continue to pray for your family Amey and for inner peace going forward. Thankful that the radiation has not been too hard on Phoebe and praying daily for her.

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  11. Oh JESUS, bless this family. Please bless their time together. Touch Phoebe’s little head and help her as she endures so much. I know the mood swings are hard on everyone. Help them to see past them and to continue to embrace each moment, each second. Help them to live large during this time as they cling to you and to one another. We are still reaching out to the hem of your garment for Phoebe and asking for a miracle, knowing she IS a miracle. Send the Comforter LORD. In JESUS’ name. Amen

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  12. Dear Jesus, You are so good. I pray for your incomparable presence for Phoebe, for Nathan and Amey, for the boys (especially Deacon as he struggles through this intense experience that no child should have to cope with). Would you please, I beg of You (if I can be so bold, Lord), bring healing to their little Phoebe. Please don’t take her home just yet, she would be so missed. If You decide that You are more glorified to bring her home, Father, I proclaim Your everlasting presence upon my friends and their little family. I claim Your power over them, Holy Spirit, that you will fill their lives and their grief with such a movement of your presence that they would literally bask in your glory. That they would see You for EXACTLY who you are. And although Your ways are too high for us to grasp, that in this difficult season, would you give them a completely irrational and insane amount of peace, so much so that people are baffled and must know who this God is that could bring such peace. I claim life for their family in Your precious name, Jesus.

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  14. Continuing to ask the LORD to draw near to all of you and to flood you with the PEACE that HE is. In JESUS’ name. Amen

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