Quick Update

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Phoebe has been struggling quite a bit with neuropathy (nerve pain) in her feet and legs. It makes her pretty miserable at night. She has also had high fever over the past 48 hours which makes her feel crummy. Through it all she hasn’t lost her determination and will. She never ceases to amaze us.

-Nathan

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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.

31 responses »

  1. Poor turkey, she deserves to be as comfortable as possible. Wish there didn’t still have to be so much struggling for her and for you to have to watch it. (((HUGS))) and prayers, she’s a wonderful and inspiring little girl!

  2. Sweet Dreams Little Angel!

    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!

  3. Nerve pain is NOT fun! I know. Our family continues to lift her and all of you up to The Lord. Praying for rest and strength as you walk this journey! Hugs to you and your beautiful Phoebe!

  4. I sure love to see that sweet face. Praying for her comfort and relief from her pain. I hope you all have a lovely, uneventful weekend.

    Love & Blessings
    Stevie

  5. Oh God bless you sweet little Phoebe. I have tears in my eyes for you and your dear family. You are an example to us all. I am continuing to pray for peace and comfort from the pain. You are so very brave, and so are your family. Sending hugs across the ocean from Scotland.

  6. Praying for the Pain to go away. Jesus Phoebe and and Nathan and Amey and all of us need you so much right now. My heart cries for you Nathan and Amey.and Phoebe. I am praying for you Phoebe. .

  7. Thinking and praying for you all and praising God for your precious  Phobe-lecious.  I love you even though we’ve never met.  So many lives have been touched by your family.  I just hold on to what Phoebe shared and say it aloud often…God is not a meanie.  Thank you for who you are in and with Christ Jesus, our Lord. Every thing falls so far short in trying to express love sometimes…but I have learrned to remind my self that no matter how much I care or love when I grieve over someone elses pain…my caring is not even a faint shadow of His love and caring for you. Phoebe truly is a miracle. 

  8. Prayers for ease of pain for sweet Phoebe. Prayer for the family always. Your family has become family to many. You are loved by and through prayer and even more by our Mighty Savior.

  9. Know you are being prayed for along with others across the globe who love Phoebe and your family. We are all with you.

    Sent from my iPhone

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  10. Thank you for the update. I know this is very precious time for the whole family and your willingness to share anything with us is a privilege to us. Praying in CA. Loving you, Amey, the boys and Phoebe as we lift you before the throne of GOD. Praying JESUS meets every need you have and that HE covers you in the shelter of HIS wings… hide there in the cleft. With much love.

  11. Somehow, I didn’t think it was possible for Phoebe to get any cuter…and poof…she does!! I love her quirky outfit, especially those slippers! Phoebe, you are adorable. Period.

    Hugs and prayers for continued good times with the Phoebster. All praise to God for allowing Phoebe to enjoy so much more here with her family and loved ones.

  12. As you know, every moment with our loved ones is a precious gift from our God, regardless of circumstances. Love to all.

    Sent from my iPhone

  13. Do you think I can get that outfit in a Misses Size 9? 😉

    Praying that the nerve pain will stop and that Phoebe will continue to gain strength. Prayers for a special weekend of time together with family.

  14. I went to the healing rooms on Phoebe’s behalf. Praying fervently for her healing and any pain to be gone. Blessings to the whole family!

  15. GOOD MORNING PHOEBE AND FAMILY,

    EARLY MORNING HERE IN ILLINOIS – PRAYING FOR PHOEBE AND FAMILY THROUGHOUT THE DAY AND SHE IS AN EXAMPLE FOR US ALL ON HOW TO GIVE YOUR BEST AND “SHE IS GIVING HER BEST”. YOU ARE SO”PRECIOUS PHOEBE” AND THE VICTORY OF FAITH IS TO TRUST GOD IN THE DARK. “THANK YOU FOR SHARING HER WITH ALL OF US”. I PRAY ALSO FOR YOUR FAMILY AND THE STRENGTH, FAITH AND HOPE TO SEE YOU THROUGH.

    HAVE A BLESSED AND BEAUTIFUL DAY!

    WITH LOVING THOUGHTS AND PRAYERS,

    SUZANNE

  16. I absolutely adore this picture! What a wacky, wild gypsy sweet potato! This is the picture I’m going to hang on my cubicle wall at work to remind me of Phoebelicious. LOVE LOVE LOVE HER!

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