Home on Hospice Care

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We are back at home, and Phoebe is feeling better and better. We have a couple of new pain meds on board for her head and back pain that seem to be working well so far. We are transferred over to hospice care now and they will meet our needs at home. Leaving the hospital today we traveled through a tunnel of tears as we shared hugs with the D6 nurses whom we have come to know and love and who love Phoebe. And then we said a tearful goodbye to Christy at the front desk and the pharmacy lady who always speaks Spanish and we drove away….
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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.

13 responses »

  1. Phoebe looks so cute in her pretty yellow dress!! So happy to hear you are headed back home. Praying for more good days for you all!

  2. So happy y’all are home! May Christ Jesus continue to bless Phoebe and all of you with healing, peace, joy, and love. Thank you for sharing Phoebe, your miracle of illuminated light, with all of us.

  3. I know everything seems unfair because it is. I know you are weary and feel like God has given more then we can handle this I know because the same thing your child is going through. Our love one did as well. Our hopes of her getting heal and praying for a last minute miracle. Asking God why does he say if you have faith and you tell that mountain move it will, yet with our faith or at least mines I truly believe she would get heal and it didn’t. I know I ask God why did you say you will lay hands upon the sick and they will get heal I did it many times, prayed day and night did prayer vigil, and at the end non of it work. I felt discourage, mad, faithless, angry. Trusting God is our best way and I do pray that God gives you the strength you guys need to get through this. I still believe God can do a last minute miracle because God is mysterious but regardless of what God decides don’t walk away from God. Love you guys and I know what you guys are going through.:-/

  4. Mary, I just discovered Phoebe’s blog. I learned of it through my cousin, Melinda, who is mom to Jessica and MIL to Justin Melinda told me that y’all are friends of Jessica and Justin through your time in Waco.
    Please know that you have my prayers and I have so many ideas about what kind of treatments Pheobe. Hundreds.
    Joking;)

    God bless Phoebe and her sibs, other family, her doctors, her nurses and, of course, you and your husband. Hold on tightly.

    Jan Thomason

  5. She is sure an adorable little girl. Sending love to all of you and her. Please know that God will care for her always

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