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Phoebe is still having a rough go in the hospital. Yesterday there was a mix-up in her orders and her Hydrocortisone was dicontinued. Well, Phoebe is cortisol dependent and can not live without it, so by yesterday afternoon she was floppy, distant and fading. Her heart rate was accelerated and her sodium was very high and thank God they finally figured it out before she crashed. Needless to say it was a rough day.

Her body is still not absorbing Potassium which is most likely a kidney issue, and that could continue for weeks, or months, or years or just suddenly correct itself. I constantly have to remind myself that people can live with potassium supplements but they can not live with AT/RT. People can live with Diabetes Insipidus but they can not live with AT/RT…etc.etc. Chemotherapy is a double edged sword.

Right now she is receiving her second blood transfusion and yesterday she received platelets. Her ANC is 40 today which is still pretty low, but at least on the upswing. We will be here for a few more days until her counts recover and she is in better shape. Thank you all for continuing to pray.

~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.

7 responses »

  1. Psalm 72:12-14 NIV
    For he will deliver the needy who cry out,
    the afflicted who have no one to help.
    He will take pity on the weak and the needy
    and save the needy from death.
    He will rescue them from oppression and violence,
    for precious is their blood in his sight.

    Praying for you Phoebe!!

  2. As a mother of three (now adult) daughters…I simply cannot imagine how difficult this journey has been for you all. Just wanting you to know…that I am praying for you all from the compassion of the heart of a mommy. I will continue to lift you all up for the surrounding of peace and comfort and to stand for complete restoration for Phoebe’s little body.

  3. Amey, standing with you in prayer! Lean not on your own understanding, but in all your ways acknowledge Him. Lord, we do acknowledge you. And ask that you help us to keep our eyes and thoughts focused on you and your ways. Please come close and rest your hand of grace, comfort, and provision on Pheobe, Amey and their family.

  4. Amey, you don’t know me but I came on board praying for Phoebe through the group “pray for Eva-Camille Pliego.” I think of you and your family often and pray for Phoebe and all of you daily. Praying for continued healing for Phoebe and all of you as you share in her pain. Also praying God’s blessings on Deacon on his birthday! God bless you and keep you and give you peace.

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