Sunday Morning

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Updating is sometimes hard when we are in the thick of things. I know many of you have followed Phoebe from the beginning and are very invested in her life as well as those who are just now joining the fight. I will do my best to update during hard times.

Phoebe is having a bit of a rough time. The pressure and pain in her “noggin,” as she calls it, has been growing in intensity. She has been sleeping quite a bit, listless and doesn’t feel well enough to even sit up. To top it all off, she has high fever, which I’m sure is making her feel worse.

It has been hard to discern between what is disease progression and what are the things that we can do something about. On a positive note, her nerve pain is getting a little better and she isn’t complaining about it as much.

-nathan

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.

12 responses »

  1. Sending LOVE and PRAYER and COMPASSION to you Nathan and to everyone there.
    YOU are a wonderful God-filled husband and daddy- With a family just the same teaching so many people about living with Jesus.
    Loving all of you at all times,
    Marilyn from TN

  2. Dear Amey and Nathan – I’m 76, a friend of Caroline and the late Don Merrell. Donny is the one that first let me know about Phoebe’s situation, saying they were friends of the Ziglars. I have since followed you all, praying for Phoebe and your family.. Your family is in the right place right now and your memories will be forever. I haven’t ever known anyone (except Caroline Merrell) that could be more prepared for the next life than you and your family – I’m sure the boys will anchor down when the time comes as well. Your journey has been an addition to my own before and after witnessing Donny Merrell’s passing in one week. God Bless your extended family and friends who are and have been there for you.
    Sincerely,

  3. Bless you, sweet daddy, for thinking of us during this time, but it makes me cry out louder to God. We can always trust His heart even when we don’t know why.

    LaNell in Jacksonville

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