Phoebe On The Heart Floor

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Phoebe is doing better since her seizure this morning. They only had room for us on the heart floor. (Don’t worry, her heart is fine). All weekend, and since the seizure, she has had really bad headaches, stomach cramps and vomiting. In the morning they will be giving her an MRI to make sure everything is okay.

She will also be receiving Intrathecal chemo as well as IV chemo all week. But as we all know this week her last and by Saturday we will be done for good!

-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.

10 responses »

  1. Glad to hear Phoebe is feeling better and will be praying for these scans to be fine.

    Philippians 3:13-14 Brothers, I do not consider that I have made it my own. But one thing I do: forgetting what lies behind and straining forward to what lies ahead, I press on toward the goal for the prize of the upward call of God in Christ Jesus.

  2. Many loving thoughts and prayers to your beautiful angel girl! No one should have to go through what cancer puts a person through, and especially sweet little children. My heart aches for all she has been through, and I pray that God gives her a complete healing.

  3. Wow, you nearly sent me to the heart floor on that one!!!
    So glad that is the reason and waiting for that baby to be well.
    God bless

    • Well, I said Bless her heart and now she is on the heart floor. She is such a trooper. Know that we continue to stand with you in prayer.

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